The Best Time of Day to Take Intuniv

Written by dad - 420 Comments

A couple of week ago, I noted that our son had started taking Intuniv to treat his nervous tics. He started out with a 1mg dose, increased to 2mg after a week, and then to 3mg a week later. Easing patients onto Intuniv in this fashion is the standard approach.

Unfortunately, shortly after he started taking Intuniv, he started having problems with insomnia. He’d fall asleep just fine but would wake up at 2AM or 3AM and then be unable to get back to sleep. After consulting with the doctor (who also checked with the pharmaceutical rep) we ended up switching from morning to evening doses.

The good news is that the nighttime sleep problems are gone. The bad news is that he now comes home from school absolutely exhausted. And by that I mean completely and totally wiped out. We’re hoping that he adjusts to the Intuniv in the coming weeks such that he’s no longer so tired in the afternoons, or so we can switch him back to morning doses without disrupting his sleep.

I’ll update when we know more…

Published on February 9th, 2010 - 420 Comments
Filed under: Health
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Comments (scroll down to add your own):

Why treat for the tick at all? Is the annoyance so bad that affecting the rest of his life is worth it?
Comment by Andy — Feb 11th 2010 @ 11:15 am
Thank you so much for posting this! My son is also on week 3 of Intuniv (which is greatly helping his attention, moderately helping his inpulsivity, and not at all helping his stimming from autism) and we are also experiencing insomnia in the wee hours of the morning. I am very anxious to read if your son is able to tolerate the change and how things go. Mine wants to crash at 6:00 pm and then stay up from 4:00 am on. Unforunately, he’ll wake up that early even if I can get him to stay awake until 7:00 or later. Our doctor suggests melatonin but I am reluctant to try it. My son is already on three meds with fatigue as a side effect – Abilify, Intuniv, and Clarinex for allergies. Adding a sleeping agent makes me quite nervous. I would love to read comments from others in our shoes. Thanks!!!
Comment by Laura — Feb 13th 2010 @ 8:11 am
Hi
We are about to start the Intuniv with our Concerta 36mg, which we’ve been on for my 11 y/o for 5 yrs. He has reached a peak with this and his underlying anxiety is not being addressed with a stimulant. I’m thinking of waiting until spring break to try it, after reading about the sleep issues. Having said that, we take Melatonin quite often for sleep with no issues. Its a natural hormone in our bodies and we’ve had no side effects at all. I give him 50-75mg (breaking a 1mg tab) and he doses right off and is not sleepy in the morning. Give it a half hour before you want them in bed and they will be more relaxed.
Are you happy with the Intuniv so far?? I’m always nervous to try new medications-Concerta has been our only one for 5 yrs.
Thanks.
Comment by Veronica — Feb 19th 2010 @ 6:40 pm
The jury is still out on Intuniv for us, but there are so many other factors that make it a complicated question to answer. In December we had to stop Risperdal and switch to Abilify because of metabolic side effects from Risperdal. At the same time, we stopped Adderall because of issues with agitation and night terrors. A month later, he lost his aide at school and had a number of subs fill in over the last few weeks. So, it’s kinda complicated to judge just the Intuniv in the middle of all these other factors.

I can tell you that the 3-mg dose was an absolute nightmare for us. The day after upping it, my son had to stay home from school because he was sooooo lethargic. I actually took him to the doctor because I was afraid he was ill – pneumonia is going around our area right now. He was fine! The behavioral doc still asked me to try and hang in there for a week and see if the side effects lessened. I made it only three more days before I took him back down to 2 mg. The insomnia got worse, and he was either catatonic or psychotic. Either way, it was terrifying to watch.

Happily, on 2 mg given at about 6:30, after supper but before bed, things are seeming to switch around. Only once in the last three days has he gotten up at 3:00 in the morning for the day. Once he got up at 6:00 am, just the right time, but was so tired that he missed the bus. But he’s holding his own at school. Not too agitated but no longer acting as if he has lost his joy, either. In fact, today his math teacher and his speech therapist both used the word “mellow” to describe him.

Veronica, I know what you mean about it being scary. I always feel like I am abusing my son, using him like a lab rat. Then I remind myself that the option of doing nothing is worse for him. I hope Intuniv goes okay for you, especially if you are already familiar with melatonin. Let me know how that goes, okay? We still haven’t done the melatonin yet. If things keep going like they are, I would say it is doing a decent job. The stimming is starting to settle down and he is no longer trying to get someone’s attention by smacking them. His last three behavior reports from school were all marked excellent, on a scale of excellent, good, fair or poor.

Good luck!!!
Comment by Laura — Feb 19th 2010 @ 7:01 pm
Hi, my son started taking Intuniv right before Christmas 2009. We had been using stimulant drugs such as Concerta and more recently Focalin XR. However, his tics became so bad that he literally looked like he had tourettes syndrome. I am not exaggerating either. So our doctor suggested Intuniv. We stopped his dosage level at 2 MG and he takes is everday at 4:00pm.

Two weeks ago I got an e-mail from his teacher at school about some behavior problems he was having and so his doctor recommended we go up to 3 MG.

The first few days there didn’t really seem to be any side effects to the change in dosage. However, during the last 5 days, he falls asleep as soon as he arrives home from school and will sleep two hours, he fell asleep at school and had to be awakened, he either wakes up several times a night or he wakes up really early and stays awake. He has been having trouble eating. His doctor told us to take him back down to 2 MG for a few days and then try the 3 MG again.

Besides the side effects, his ADHD symptoms have definitely minimized since taking the drug. He still has some tics but they seem to be more prominate when he gets stressed.

Keep posting your updates. It helps to know others who are experiencing the same things you are.
Comment by Kim — Feb 24th 2010 @ 10:54 pm
Hey there! As I write this, my son is taking a nap because he has been up since 3:00. Again. He sleeps well every other night because he is so overtired from not sleeping the night before. We did change him to an evening dose, and bumped him down to 2 mg, but still we struggle. Tonight I try melatonin.

For those whose kids take Intuniv and are also autistic, have you noticed a difference in behavior and/or eye contact? I am not sure if what I am seeing can be attributed to the Intuniv because there are quite a few other factors messing with my little boy’s head, but I was curious to see if other autistic kids on Intuniv are experiencing some mild regressions. Or increased agitation/aggression?

At the end of this bottle (since I wasted $150 on the 3-mg bottle only to use four tablets before figuring out that my son cannot handle that dose, then having to pay another $150 for the 2 mg less than a week later) I want to bump him back down to 1 mg and see what happens.

I appreciate everyone’s input on this message board! It really helps me brainstorm what might be best for my kiddo – thanks!
Comment by Laura — Feb 28th 2010 @ 2:49 pm
My son will be 10 this month. He is the sweetest, funniest, affectionate, loving boy. Then he is the rudest, disrespectful, demanding, defiant boy. He struggles in school in math and writing and is totally disorganized with his schoolwork. I held him back last year, so this is his second year in third grade, with the kind of teacher who does not seem to help matters or care about his success. The disorganization and frustration have gotten worse this year than the first time around, it seems. He has ADHD and has been on Concerta or some ADHD med since he turned 4. A couple of years later, he was put on Clonodine to help him sleep nights. We would switch off Concerta every couple of years to try something “new”, but always went back because nothing new worked as well. He was on Risperdal for a year when he turned 8, because of such severe moodswings and agression, but is now off that (it worked well at the time). He now takes generic Zoloft for anxiety and possible PTSD, and it has worked wonders for his anxiety and nightmares and “daymares”. The Neurologist added Intuniv 2 weeks ago, saying the Clonodine (for sleep) may not be needed once this “gets in his system”. I also feel like my son is a guinea pig. This is the FOURTH drug, although each one works for the specific symptoms, and I am thinking of giving the Melatonin instead of the Clonodine for sleep if he still needs it after another week. At least it is natural. Tomorrow will be the end of week 2 on Intuniv. The first week he took the 1mg; this past week, 2mg. He has only gotten sleepy once at 8:30 without having to take the Clonodine, but has eventually had to take 1/2 to 1 pill each night when he still wasn’t sleepy at all by 9:30, and actually last night he took Clonodine at 7:30 and was still up at 11:00 (it usually works in 2 hours max). I am unsure what to think. I am giving the Intuniv to him in the mornings with Concerta and Zoloft (ugh, so much med). The first morning of giving him 2mg, he had a stomach ache about an hour later. No side effects before or since. I do know that since increasing to 2mg, there has been tremendous improvement in his mornings and evenings when the Concerta is not in his system. Doc said keep him on 2mg through the third week, then see if that is enough. If not try 3mg, but from what I’ve read here, I am skeptical about going up to 3mg. He also said we may be able to decrease the Concerta dosage (now at 72mg!) because of the Intuniv, but still too early to tell.
Comment by Christie — Mar 8th 2010 @ 11:44 am
Wow! My son just started the intuniv a week ago. Teachers are reporting that he’s exhausted at school and his ADD symptoms are in overdrive (he’s on 1 mg). He doesn’t sleep at night – poor child hasn’t since he was born. He’s been on numerous ADD meds and they work for awhile or they help “a” symptom, but not all of them. I am absolutely heartbroken and discouraed at this point. He suffers either way – taking meds and dealing with side effects or not taking meds and dealing with the frustration for himself and from the people who work with him all day.

ADD is such a difficult diagnosis. You think once they are diagnosed, it’s going to get better. Still has not! I can empathize with all of the parents on here.
Comment by Renee — Mar 16th 2010 @ 2:30 pm
Renee (and others) – Hang in there! It took my daughter several weeks to adjust to Intinuv. Everything was going well and then we had reports that she was falling asleep in the afternoon at school (she is 6 1/2 and hasn’t napped since she was 3). We talked to her doctor and have adjusted her meds further. She actually takes 1 mg one day and 2 mg the next day. This adjustment seems to be going well. But I have learned in the past year since her ADHD/oppositional defiant disorder diagnosis, that it’s just something that we have to keep an eye on and adjustments are inevitable. I can know this – but it doesn’t make the process of doing what’s best for her any less frustrating.
Comment by Jen — Mar 17th 2010 @ 11:13 pm
My son is 16 years old. He is severely autistic. With puberty came horrible seizures and unbearable aggression and hostility. He is unable to attend school, so I home school him. He started to hurt himself horribly and when I would try to make him stop, he would come after me. On a whim and out of sheer desperation, his seizure specialist gave him intuniv. We just started the 2mg tabs last night. He is sleeping right now, but I am ok with that. We have had only minor outbursts since we began this treatment. I sincerely hope this drug works for my son. I don’t know much about this drug so any input from other parents out there would certainly be appreciated.
Comment by Sher — Mar 18th 2010 @ 1:03 pm
Jen – thank you! I am hanging in there, but it is hard. I have seen improvement in him at home. At least on the intuniv he seems more like his own personality then on the ADD meds he was on before.

I had his conference at school on Wednesday and the teacher and principal kept looking at eachother in disgust everytime the subject of the meds was brought up. If I could make it go away for him, I would!

I just continue to push forward and hope that it gets better. I hope all of the other parents out there can do the same – it’s hard sometimes. As I read these posts, I get so upset, but I know I am not alone
Comment by Renee — Mar 19th 2010 @ 12:05 pm
Hi everyone, I am so glad I found this site. My 9 year is on week three of 2mg Intuniv. On his 1st week of 2mg his teacher called to tell me he was lethargic and not very attentive. We have been giving his dose in the evening and may switch to a morning dose because he is now up until midnight each night. This has been trying and stressful on all of us and quite frankly, we have not experienced any positive benefits. We meet with his pedatirician tomorrow to discuss dosage increase and dispensing times. We also meet with his teacher this week to see if he has improved with attention/focus this week. I am so worried about my son and feel as though is being a guinea pig for different meds but know that he would fall apart without medication. Hoping and praying for a change. If anyone has any feedback please let me know. Thanx Michelle
Comment by Michelle — Mar 23rd 2010 @ 2:44 pm
@ Michelle – I contacted my sons pediatrician this am because he is still lethargic (teachers even state he has slurred speach) and it’s not helping his ADD symptoms at all. I am insisting on taking him to a Neurologist – thankfully, his doctor agrees.

I feel the same way you do – that he’s a guinnea pig! Poor kid has been on so many meds, but also like you, I try to remind myself what his like would be like without the meds

Hang in there – you’re a good Mom and doing the best you can!! Remember that.
Comment by Renee — Mar 23rd 2010 @ 5:32 pm
Hi. I’m Kim and I posted a couple of weeks ago about my concerns with Intuniv for my son. At that time we had just upped him to 3 MG and he was falling asleep in school, very lethargic, and complained of his stomach hurting him alot.

We moved him back down to 2MG and then on the weekend we would up it to 3 MG until spring break. Starting in spring break we gave him the 3MG so that we could watch him monitor his behavior better. Surprisingly we didn’t have as much trouble. He had a few days of lethargy but then I realized something. He wasn’t drinking enough fluids.

Well, my son is very athletic and baseball is his passion. We have started baseball practices and one night during spring break he kept saying he felt dizzy and nauseaus (sp?). I took his blood pressure since we had a blood pressure monitor at our house. It was like 90/50 and he is only 10 years old. After looking online to determine if that is considered a low for his age, I found that dehydration can lower a blood pressure too.

The Intuniv already affected his blood pressure and along with his sports activities he wasn’t drinking enough fluids. Ever since, we have drilled into him to make sure he drinks alot. By doing this we have eliminated what appeared to be adverse side effects to the medication.

I have two very good friends who sons are both on Intuniv and both were able to go up to 3 MG without any trouble at all. Both of these kids were also on more than one medication.

One final note, we have recently added a short acting stimulant (Focalin 5 mg) for days he has baseball practice to help with the lethargy. So far, it seems to work well for him. Our next step is to try adding this around lunch time at school to get him through the rest of the day because that is when he seems to have the most difficulty with sleepiness and/or behavior issues.

Thanks for all of your input. It really does help to see how other kids are doing and to know you are not alone.
Comment by KIM — Mar 24th 2010 @ 1:31 am
thanks kim and renee for your feedback. I spoke with my son’s teacher this afternoon and she said that things just aren’t going well for him in the classroom. He is not as tired but is having tremendous difficulities concentrating and is just all over the place. Let me stress his teacher is wonderful and thank goodness we have her support, she truly cares for my son. anyhow, we went to the pedatrician after mtg w/ his teacher and he said that a stimulant would be best (he encouraged this from the beginning but i was very hesitant) we are going to try concerta over spring break. i hope all works out for your children and appreciate your support . now off to study and absorb all i can about concerta.
Comment by Michelle — Mar 24th 2010 @ 6:21 pm
Thank you so much for all of the postings. I have yet to start the Intuniv based on everyone’s experiences so far. We went up to 45mg Concerta, so far no big change, but his anxiety is still our biggest issue. I’m just confused and scared to take the jump. We’re going to incorporate in a child psychiatrist, hoping they will be more helpful and knowledgeable.
I’ll let you know-this happens the end of April, so I’ll see what they think of Intuniv or what they suggest.
V
Comment by veronica — Mar 25th 2010 @ 11:52 am
@ Michelle, both of my boys are on or have been on the stimulants and I can say that is where I’ve had my best luck! My little one take Adderall XR 15 mg and has been since day one with no problems. My older son has more of a group of symptoms and Adderall handles the ADHD well, but not the anxiety and other things. I stopped the Intuniv on my oldest because he developed a facial tic He’s back on the Adderall XR until he can see the Neurologist the end of May.

I also have been very lucky with both of my boys in terms of their teachers and pediatrician working with me and listening to what I have to say! From what I’ve seen and heard, this is not always the case.
Comment by Renee — Mar 25th 2010 @ 12:36 pm
Hi Girls,
I am filling the RX for Concerta today and then going to start my son over spring break. His pediatrician and his psychologist both feel a stimulant will work well for him. I was doing research for hours about Concerta yesterday and feel so overwhelmed with all the info but at the same time I need to know what my son is going to possibly be experiencing side effect wise. I again am so glad I found this site and appreciate all your feedback and support. WIll let you all know how things are going. Veronica, please let me know how the INTUNIV works out for your son, and Renee, how old are your boys if you don’t mind me asking? My son is 9 (soon to be 10)
Comment by Michelle — Mar 25th 2010 @ 1:35 pm
My oldest just turned 10 and my little one is 7 1/2. Both of my boys started on stimulants when they were 6. Once they started full time school it was too difficult for them to contain their ADHD. Be ready for the weight loss! Both of my boys do not eat much for lunch. I always make sure they eat a nice protein packed breakfast and good dinner. I also make snacks available to them right after school and before bedtime. Other then that, they had stomach aches the first couple weeks when they started, but that’s it for side effects. Note – if your child seems like he is drugged up – most likely the dose is too high! You want them to be settled, but still their personality.

I just found a site called Native Remedies which has alot of good (natural) products for ADD/ADHD. I just ordered some stuff from them. I’ve heard good things about the BrightSpark and FocusFormula that they sell. It’s always worth a shot

I’ve also been told to incorporate Flaxseed into their diets. You can get it in oil or powder form and sprinkle it on their foot. It has a slight nutty taste, so you need to put it on fruit or cheerios.

I’m open to providing any information that I have to other parents going through what I am. So, no I don’t mind you asking my boys ages! Any other questions you have, just let me know.
Comment by Renee — Mar 25th 2010 @ 2:17 pm
Hi Michelle

I know a new medication is scary, but my experience with Concerta has been very good. Its truly the reason I’m holding off on Intuniv-I know this one works, but its just not helping with his anxiety.
The first several weeks, 2-3 are tough. The Concerta kills their appetite and causes GI upset until they adjust, then they slowly regain their appetite. The other issue we had was sleep. It was tough getting to sleep at night because he felt like his mind ‘wouldn’t slow down’ and it kept him up, actually making him very upset. This too passed, but its hard when they are going through it.
We’ve been with Concerta, our only drug, for over 5-years and it really helped with the ADHD symptoms, but a stimulant will never be the drug of choice for anxiety, so the search for our next step goes on.
I’m not going to try Intuniv until we see the child psych the end of April-I’ll let them guide me-they are the experts. I love my Ped, but this is really out of their scope.
Good luck and post with questions!!
V
Comment by Veronica — Mar 25th 2010 @ 3:34 pm
I posted on March 8. We have managed to try different dosages with Concerta and Intuniv, and are now for the 2nd day on Concerta 72 mg, and Intuniv 3mg. This seems to be working fine so far. 1st week was 72 C (Concerta)/1 I (intuniv). Not much difference, or sleepiness. 2nd week was 72 C/2 I, a beneficial difference in morning/evening symptoms when the Concerta was not working, third week went down to 36 C/ 2 I – behavioral problems returned like when he used to be on 36 C, this week I managed to increase the Intuniv to 3mg with 36 C, he was sleepy enough in the evening to stop taking his nighttime Clonidine (which has been off and on for the past couple weeks with only taking the 2mg I).

Sunday visiting his dad, he had a pocket knife accident (which he now has to have surgery on his thumb tomorrow morning), and Tuesday’s field trip that I volunteered to go along on, I could really see him in his school-chum environment, and knew that the 36mg of Concerta was not doing the trick to keep him safe and not so impulsive and for lack of a better word, SENSIBLE, so yesterday I raised it back to 72 C with the 3mg I. So far there are not any side effects except that he can finally go to bed at night without the other drug Clonodine to help. He is not sleepy during the day, since he has the stimulant to go along with the Intuniv. I know this sounds like a lot of drugs for such a little guy, but I have come to accept the fact that they are more beneficial to him than if he was not on them.

He also takes 50mg Sertraline (Zoloft generic) for anxiety, which he has been on now for a few months. He started out at 25mg. The 25 did not seem to help, so I almost gave up, but the Neurologist suggested I really give 50mg a shot before losing hope, and I am SO glad I did. His anxiety is so remarkably less. I am thankful I did try this for him. He was scared to go into the bathroom alone, or go get a pair of socks from his room, or be outside even 15 feet from me. He was afraid of spiders (TINY ones), bees, (as am I), bugs, thunder, wind, tornado warnings, anything a normal 10 year old can deal with usually. Always worried, nightmares, daymares (as he calls them) awful intrusive thoughs. Long story short, the anxiety medication has made a world of difference.

Good luck, and I know it’s very hard to try new things, and you think you don’t know what you are doing to your poor child, but good does sometimes come out of experimenting with different meds or combinations of meds (with doctor’s recommendation, of course). I am still trying to find the right “mix”, but get closer, I think, as time goes by.
Comment by Christie — Mar 25th 2010 @ 6:08 pm
Thanks Christine-your post takes away some of the fears that come along with a new med! I hope your little guy continues to do well and the surgery helps his thumb!
V
Comment by Veronica — Mar 25th 2010 @ 7:15 pm
Please people stop giving your young children prescription drugs which have not been fully tested (this means they have to be trial and tested over a 10 YEAR period) You are damaging them. Just looking at the ‘safety’ info on INTUNIV for example you can clearly see that the drug co. does not care about solving your childs problem- the info. has add ‘your child’ …look at it…’your child must not operate heavy machinery or drink alcohol while using INTUNIV’…how many of your 10 year old do this normally? READ the information available to you. Go to [redacted] find out the truth about the drugs you have been giving your children since the age of 4…YOU are makng them sick! Stop immediately buying and administering these drugs.

Edited by dad: I just searched the site in question, and nothing about Intuniv came up. I’ve removed the url because it’s not directly relevant to the discussion at hand.
Comment by Martine Flynn — Mar 28th 2010 @ 9:29 am
@Martine Flynn – you have too much time on your hands. Kindly stop using it to criticize people you know nothing about. You are entitled to believe in your naturopathic quackery as much as we are entitled to believe in our children. Your comments are needlessly rude, judgmental, and do much more harm than good. Unless you have something to add about your personal experience with your child needing this particular medication, do us all a favor and butt the hell out. You think we haven’t tried your way before? You think I haven’t wasted thousands of dollars on snake oil treatments like this? You think your way doesn’t carry just as substantial risk? No, you didn’t thinka bit. You just automatically criticize. I notice your Natural News does not have a forum where I can publicly criticize you, does it? Keep your judgmental hypocrisy to yourself. You have NOT A CLUE about the damage you are doing to the parents on this board. Thank you for ruining our days, you meddling fool.
Comment by Laura Cichoracki — Mar 28th 2010 @ 10:03 am
I totally agree with Martine… let these kids be kids! It is normal for them to be a pain in the arse. Just tolerate them! And if they reaaaaaaaaally need medication, don’t go everywhere talking about it just like if you were on a vet forum asking which tranquilizer you should be giving your dog to travel!
Comment by María — Mar 28th 2010 @ 12:54 pm
@ Laura – My aim is not to cause harm or distress to the parents on this boad – it is precisely the opposite…NaturalNews is just a site that I am aware of that publishes ‘real’ scientific data which all parents should be aware of when deciding to medicate their kids…read this below article excerpt from another site…it’s research….and it is very telling ….what will be the outcome of years of ADHD prescription drug treatment on the child? Will the symptoms miraculously disappear?….
A recent review of research by University at Buffalo pediatric psychologists suggests that [ADHD] medication, or the assumption of medication, may produce a placebo effect — not in the children, but in their teachers, parents or other adults who evaluate them.
A placebo effect is a positive change in symptoms or behavior after a patient receives a “fake” medication or procedure; in other words, the belief can become the medicine. In this case, the review suggested that when caregivers believed their ADHD patients were receiving ADHD medication, they tended to view those children more favorably and treat them more positively, whether or not medication was actually involved.

“The act of administering medication, or thinking a child has received medication, may induce positive expectancies in parents and teachers about the effects of that medication, which may, in turn, influence how parents and teachers evaluate and behave toward children with ADHD,” said UB researcher Daniel A. Waschbusch, Ph.D., lead author of the review.

“We speculate that the perception that a child is receiving ADHD medication may bring about a shift in attitude in a teacher or caregiver. They may have a more positive view of the child, which could create a better relationship. They may praise the child more, which may induce better behavior.”

Such a placebo effect in caregivers could have both good and not-so-good results, Waschbusch added. “If teachers treat children more positively if they think they are on medication, that is a good thing. But if the child’s medication is increased because caregivers think it is effective, that may not be a good thing.”

P.S. I notice you have not addressed my question about why the warning label talks about pregnancy, operating heavy machinery and alcohol when it is clearly a drug for children?
Comment by Martine Flynn — Mar 28th 2010 @ 2:36 pm
@Maria – is there some kind of buttinski virus going around here today??? Your opinions are not appropriate for this board! How dare you judge any of us? Take your high and mighty attitude and get out of our business! We are here to support each other through making tough choices for our families. Clearly you know less than absolutely nothing about what we go through, or you would have known better that to post such thoughtless and judgmental comments. These kids are not just pains in the butt. They are hurting themselves and others, and they need help if they are going to get an education and have an independent adulthood. Which you would know IF you had one iota of experience with our lives. But you don’t – you just run off at the keyboard without knowing what you are talking about. How dare you assume this is a casual decision or compare our children to dogs? You and Martine can take your know-it-all smugness and congratulate yourself on knowing everything on some other board. This one is meant for parents to support each other through difficult decisions. We get enough crap from people like you every day – you do NOT need to invade our space!!! Since you clearly know nothing at all about our families, let me explain to you that a site like this is informative and therapeutic. Medicating our kids is scary, and there is not one single drug out there that can be counted on to help anybody consistently, and they all carry boatloads of horrible side effects. We have already shredded our guts in deciding we have no other choice but to medicate – why wouldn’t we want a board where we could brainstorm together and share experiences and help each other. You know that kid in the store having the mother of all tantrums on the floor? He’s mine. You know that ignorant woman rolling her eyes, wondering about the fitness of his parents, patting herself on the back for her superior parenting knowledge? That’s you. Maybe you’re even the one that thinks kids like ours shouldn’t even be in public if they need meds. If bonding on a website and brainstorming offends you, probably you also don’t tolerate having to be subjected to witness it live and in person. Take your cluelessness and go away.
Comment by Laura Cichoracki — Mar 28th 2010 @ 2:40 pm
@ Martine, I have no idea why they label the bottles the way they are. I have too many other issues to handle in a day to ponder the universal effects of the labels. I already know they come with the potential significant damages, and I understand there are probably effects that we aren’t going to know about for a while. I already know I am possibly making things worse. I already know the placebo effect. I don’t have too many options at this venture – but you can’t know that because you don’t know a thing about what we have already been through. Do you really think we just sit in doctors’ offices and line up like lemmings to pop pills? Do you really think we haven’t tried herbal, homeopathic, naturopathic, alternative or whatever else treatments as well? You don’t know, which is why it is so absolutely infuriating to me. YOU DON”T KNOW! I don’t know, the team of doctors don’t know. Nobody knows! Nobody can tell me what made things so bad or how to make them better. Everybody, though, has an opinion on what the “right” thing to do is. The kicker is that nobody has been right to date! One medication worked, but we had to stop it because of the side effects. We had one glimmer of hope for a normal future, and now it’s gone. I assure you, I love my son and would not poison him just becuase some guy in a white coat says I should try this. I do my homework. I have tried all the remedies and diets and lifestyle changes and alternative therapies. I have been on the brink of bankruptcy doing all of this, because your website and all the others like it fail to mention that these things are not cheap – and are actually more expensive than the medicine! And, quite frankly, there are just as many greedy people proffering shady “research” and “truth” for their own financial gain as there are in the pharmaceutical industry. Everybody has the answer, and everybody is wrong, and I am left to sort things out for myself – knowing that failure on my part will doom my son. So I apologize for flying off the handle, but you had no place butting in and striking this particular nerve. This is a place for parents who understand what the other is going through without resorting to having to open up painful emotional wounds and explaining things to “outsiders.” You aren’t helping me by accusing me of damaging my baby and making him sick deliberately. Quite frankly, it’s already there in the back of my mind. Now, try to imagine what it’s like if I am willing to risk that in order to find a future for my son. If you can imagine the torment that we go through every day (and unfortunately for me, these last two days have been real whoppers), then you should have no trouble imagining why it angers me that you would insert yourself into this thread of conversation. All you and Maria do is twist the knife that is embedded in our hearts every single second of every single day. This is a brainstorming board, not a debate on treatment options. This is specific to Intuniv.
Comment by Laura Cichoracki — Mar 28th 2010 @ 2:57 pm
Here is a little more for you… I will try not to post too much as it seems to bother you to an unreasonable extent. ADHD is a terribly complex problem; yet another in which the line between “normal behavior” and pathology, fuzzy enough to start with, is vulnerable to movement by all sorts of social forces. As with depression, there are clearly some cases that call for medication, despite medication’s problemmatic efficacy and risk-benefit profile; cases, in other words, where the benefit stands to clearly outweight the risks. But there are others where the real problem is parental incompetence, neglect, confusion, or inexperience, or some other gap between the needs of an essentially healthy child and the capacities of the parents or school to meet them. Sometimes the gap gets filled by medication. It’s interesting to see that the medication may fill the gap partly by changing the behavior of the caregivers, not just the child.
Comment by Martine Flynn — Mar 28th 2010 @ 2:57 pm
Ok Laura – I can see that I have upset you…Again, it is not my intention so apologies for that. I know there are a lot of sharlatans around, ready to take your money. I went to the INTUNIV site after reading about it and found the information and ‘evaluation’ process there to be completely ridiculous and an insult to my intelligence…I hope parents on this board thinking about this particular drug, and others like it, will take extra time to think about it first before committing.
Comment by Martine Flynn — Mar 28th 2010 @ 3:04 pm
@Martine

Wow! We don’t need criticism! We all have been through so much and people like you just make it worse. The reason Intuniv has those warnings is because it is a medicine that has been around a long time. It’s used to treat many different health issues. ADD just happens to be the most recent that the FDA has approved. So the labels are there because people of all ages use this medicine.

Laura, I’m sorry you have been fighting this battle (on this board with Martine) alone! But clearly you are wasting your time and it is only upsetting you. I completely understand where you are coming from. Know that you are doing what is right for YOU and YOUR FAMILY! And that is no one else’s business but yours, your family and physicians!

Martine – really – go somewhere else. While everyone is entitled to their opinion, we are here to support eachother and not criticise. This is hard enough on all of us.
Comment by Renee — Mar 28th 2010 @ 5:58 pm
Hi Laura

I’m with Renee-you are thinking of your child. Its a painful journey and for those who are lucky enough to not have to go through it, support don’t be critical of someone doing the best they can.
My brother is in his 50s and thinks he had some sort of learning/ADHD issue, which at that time was not addressed. He has never graduated high school, been married/divorced several times, suffered from alcohol and drug issues and generally not had a great self image. He now can see that he just wasn’t able to learn and unfortunately self medicated. He see’s me struggle with my son and his issues and wishes someone had intervened to help him when he was young. I don’t want my child to have that regret when I do have the power to help.
Martine, I wonder how many people just steer clear of you because of your cold demeanor and delusions of grandeur-have you yourself been tested for any personality issues? You sound like someone who might benefit from a medication-its called humility.
Comment by Veronica — Mar 28th 2010 @ 9:45 pm
Thank you, Veronia and Renee!!! God bless you for easing some of my anxiety and sticking up for me and just knowing in your heart what I am trying to say. Having moms like you here on this board, who understand what its like without having to spell everything out in graphic detail, makes my job a little easier. For that, I thank you from the bottom of my heart. ((((HUG))))) Hope this week is an amazing one for all of us and our kiddos!!!
Comment by Laura Cichoracki — Mar 29th 2010 @ 6:47 am
Renee and Veronica – I sympathise with you and I have respect for Laura – If only people like Laura existed on some of the other sites then a decent communication can take place. I did not attack anyone, nor did I ‘fight’ with anyone here. I merely presented ‘factual’ information after my first comment, which I admit was not fully explained. I also apologised and I did not mean to upset people to such a degree.Let me wish you all peace and rest from your worries. I also wish that you can find solutions that are better than these dangerous medications…And yes, most of us have ‘disorders’ of one type or another well into adulthood and support is very important. Good luck!
Comment by Martine Flynn — Mar 29th 2010 @ 7:32 am
Matine – First of all let me say that I respect your right to your opinion as we are all entitled to your opinion.

I have a question. Do you have a child with ADD, ADHD, or autism?

If you don’t, then I suggest you leave this topic alone because you really don’t understand the dangers and harm not treating this type of problem.

ADHD runs in my family and I have seen first hand what can happen if left untreated. There are three main characteristics of ADHD and each child with this disorder can have varying degrees of characteristics. For me the impulsiveness is the worst in which it can result in extreme anger, violence (the child hurting itself or attacking another individual), and emotional distress because of their lack of control.

Not one parent on this board WANTS to medicate their child, but it is the lesser of two evils. There are just as many risks NOT medicating a child as there are with medicating a child.

The warning labels you keep talking about are STANDARD label on all medications. Plus intuniv is not just for children.

Also, children don’t have the mentality to adjust their behavior and control the excesses as other children without this disorder. It takes extreme effort for a child to do this without medication.

I know several people who believe in the hollistic (sp?) approach and that is all well and good. However, you still have the same placebo effect in this method too.

Many ADHD children do get off of this medication after they go through puberty because by that time they have the mental know how to control their behavior. There are just as many who need to continue as they become an adult.

Would you tell a diabetic to stop taking insulin? Would you tell a manic/depressive to stop taking medication which can lead to health risks and suicide?

What the parents here are talking about is a DISORDER a true and medical problem and need medication in order to be a KID.

None of us are medicating our child to the point of non responsive children. WE do allow our KIDS to be KIDS.

A parent has to evaluate what is going to harm our children the most. Giving medication or not giving medication.

There are always pros and cons to each method. Regardless of your personal views about giving medication to children, we as a parent should do what we feel is best for our child.

Your opinions have been noted, but please give us our space to find support in one another because believe it or not we would rather not have to medicate our child.
Comment by KIM — Mar 29th 2010 @ 9:27 am
Well said Kim! I have been a Registered Nurse for 17-years, and I’m always sad and surprised when people stop taking medications based on advise from a source with no clinical evidence-which all holistic medications are based. I wish neurofeedback, fish oil and high vitamin concentrations would help, but they do not-we’ve tried, as I’m sure many of you have as well. Concerta, unfortunately does, so the quest for the correct dose, some therapy and patience are all we can do.
I am like you-if I could NOT medicate my child, I would. He cannot control his impulses and stands out socially. He has been shunned and bullied by peers, and when we address it, it always comes back to my son, because ‘he’s just different.’ Its painful, but it helps him control his behavior, since the executive functions in his frontal brain cannot.
Please continue to post, knowing there are supportive families who want to hear what you’ve learned, or more importantly what you have to say.
Ignore the people who have the biggest mouths and opinions because they can hide behind a keyboard.
Comment by Veronica — Mar 29th 2010 @ 11:54 am
Martine, Obviously you do not know what you are talking about! I have two children and both have ADHD. My experience with it has not been a good one. I hate the fact that my child gets frustrated to the point of hitting themselves in the head to get the pictures out of their heads( their words ). I have ADD also and it is very frustrating to me I cannot imagine being a child and having it to the extent that my child and other chldren do. They cannot focus in school or anywhere, they have jitters and uncontrollable urges. I would like nothing more than to not medicate my child. I do not medicate them to keep them from being a child, I medicate them to help them be a child not a uncontrollable human being that is frustrated and angry all the time because they cannot control the impulses that they have. Maybe next time before you criticize people you should ask yourself who died and made you queen of ADD information?
Comment by christy — Mar 29th 2010 @ 4:52 pm
Now to other parents who know what they are talking about- Please help me i am stsarting my 8 year old daughter on 1mg of intuniv and was wondering if i need to give it to her in the mornings or at night.Note, she doesnt eat breakfast most mornings even though I fix it and try to get her to eat.
Comment by christy — Mar 29th 2010 @ 4:54 pm
Hi Christy,

my son started on intuniv 1mg given in the evening … one of the biggest side effects is being extremely tired.. i would check with your daughters pedicatrician for the best dosing time and I wish u both well ….
Michelle

also, to all of us moms and dads who are here for support THANK YOU ! we are all doing the best we can for our children and need support not criticism ! If you do not have a child with adhd or any other learning disablility you have no idea the pain, sadness and frustration our children and entire families have been through … it is easy to judge someone when you do not walk a mile in their shoes ! Keep your heads up !
Comment by Michelle — Mar 29th 2010 @ 5:09 pm
Christy-

I would suggest starting this medication over the weekend and start giving it to her about 4:00 pm in the evening.

Also do as Michelle said to check with your doctor for his input.

Expect your child to be very tired and lethargic initially but this is a short term side effect. Also contact her teachers to let them know that she is taking a new medication and the potential side effects. Not every child will react this way but a good majority do.

About the not eating in the mornings, my son never was much of a morning eater so don’t be concerned if she still doesn’t want to eat. Then again it might give her more of an appetite in the mornings.

Initially she may complain of stomach aches, but it is hard to know if it is the medicine or not. With all the stomach bugs going around school you just never know, but if the symptons stay persistent then call your doctor.

Good luck.
Comment by Kim — Mar 29th 2010 @ 6:28 pm
Thznk you all so much for your help and if you have any more advice I could use all the help i can get! I am at my wits end.
Comment by christy — Mar 29th 2010 @ 7:05 pm
We have tried strattera and it hurt her stomach so bad that she would go into fits when it was time to take her meds, vyvanse made her lose alot of weight really fast and we have tried several more but it didnt help much.
Comment by christy — Mar 29th 2010 @ 8:37 pm
I want to thank all of you that are posting here. I am a single mom of a boy with ADHD that is about to turn 9. I am a widow (my husband passed away when I was 36) so I don’t have a spouse to confer with on this. We felt our son had ADHD as early as 3 years old but he was not officially diagnosed until he was 7 1/2! Thank GOD someone finally agreed with me (he had just turned 6 when his dad passed). Since then we are now on our 3rd doc and our 3rd med. He was on Focalin XR at 20 mg in the am and 15 mg at 1pm. Found out he was way overdosed when we went to the 2nd doc. She put him on Vyvanse and got up to 50 mg and it was helping somewhat but just as I started to think we needed to increase his meds, he developed this horrible facial tic. I found a pediatrician that specializes in ADHD medication and management and the day my son was going to see him, I sent him to school with no meds and warned his teacher. If I EVER needed further proof that my son had ADHD and needed to be medicated to function, THAT day proved it! The doc started us on 18mg of Concerta and referred me to a neurologist that specialized in ADHD for a consult about the facial tic. We saw him today and he explained that many tics show up in kids with ADHD between the ages of 8 and 10 and resolve themselves around the age of 10. He told me to keep my eye on it but to be most concerned with finding the right med to manage his ADHD. He said that was the most important thing for my son and that since my son was so high on the scale with Hyperactivity and Impulsivity (to the point that he really has no friends because he is too up close and personal, in your face, touchy feely and such) that we should discuss with his new pediatrician how he felt about using Intuniv along with the Concerta. I’ll be calling him tomorrow but thought I would do some searching online to learn what I could first. I thank you all for your insight and for sharing your experiences. It helps us all so much! As someone stated before, NONE of us wants to have to give our kids meds but they have a medical condition. It has to be treated just like you would a diabetic child. The problem is that each medication and each child work differently and it is a quest to find the correct match. We will all continue to search because that is our job as a parent. We are searching to ensure our children don’t grow up to self-medicate or be loners or hate themselves and can hopefully grow up to be successful adults that can look back fondly on their childhood and say that their parents loved them and offered them the best opportunities. So, for the naysayers out there…keep off this board – it’s not for you..it’s for US, our sanity and the health and well-being of our children!
Comment by Laura P — Mar 29th 2010 @ 11:14 pm
Hello everyone,

My son is now on his 3rd day of Concerta 18mg … So far no side effects. He actually made a robot mask all by himself that took concentration and determination .. that to me was a huge deal ! Being that he is on spring break, he hasn’t been on a strict bedtime schedule but he is still falling asleep with no problems. He also had ODD and he still is persistant as ever with having his own way but this is something we can handle and alot of this is his stubborn personality.

He also told me that he has to get started on his school project ( I was shocked!) he always waits til the last minute. I am hoping that Concerta is the right med for him and that his focus and concentration will improve in the classroom. Thanks everyone for listening !
Comment by Michelle — Mar 30th 2010 @ 7:38 pm
@ Michelle,

Glad to hear that everything seems to be going well, so far! That is great! I remember when my son started the Adderall XR and he sat for 4 hours and built a Lego kit all by himself. I was amazed….it’s a great feeling.

I hope everything continues to go well, please keep us all posted
Renee
Comment by Renee — Mar 31st 2010 @ 1:29 pm
My son is on concerta27mg and 2mg of intuniv. Sometimes he is up till 3am. He is 12. Has trouble in math. The sad thing is the teachers want the meds if the child isnt focusing. Whats the school system become. Cant they deal with kids its there job. I am frustrated. This is the second week. not better yet. had headaches and nausea. I hate seeing my son go through this. Hegets very edgy and arguementive at nite. I hope somthing works.
Comment by linda — Mar 31st 2010 @ 8:04 pm
@ Linda – It’s hard, I know! My older son has been on so many different ones and not one has completely worked yet. We always have some outstanding issue. Unfortunately, it’s trial and error with these meds and what will work for each child. My son also does not sleep and the meds just make it worse. Use your judgement and don’t let the doctors push you. They know the meds, but you know your son. If it’s not working, try something else. There are so many out there. My son was on intuniv for 2 weeks and I made them stop it. He wasn’t sleeping at night, but would crash (literally) at school. He spent almost every afternoon taking a nap in the nurses office because he couldn’t function.

Keep your head up and remember you’re doing what you need to for your son! You know him best – remember that too
Comment by Renee — Apr 1st 2010 @ 1:15 pm
Well, Moms, today I asked my doctor if we could stop the Intuniv, and she agreed. My son just cannot tolerate the full 3-mg dose, and even at 2-mg I am not certain that the benefit we see, which is definite there, is worth the hassles and side effects and sleep issues and emotional issues. Which is ironic, becuase one of the reasons we chose Intuniv is because he was having issues with anxiety and nightmares and aggression, and stimulant ADHD meds definitely make agitation worse. We are going back to Adderall XR, which we stopped just in case that was making his emotional problems worse. This time she is upping the dose quite a bit, to get us through what she describes as the withdrawl period. Apparently it will take a month to get the Intuniv out of his system, and we can expect the same sleep issues and emotional outbursts while he weans off as he did titrating up. Whatever happens, I feel as certain as I can that this particular medication just is not the right fit. We gave it three months and it was not a good three months, and I have to imagine that a better option is out there.

I know how all of you feel and how difficult this decision is for all of us, and you have all been in my prayers. Even tho I am calling it quits on Intuniv right now, you and your families will stay in my prayers. I appreciate all of you bonding with me, sharing your experiences, and tolerating my crankiness! Good luck, and keep on fighting the good fight for the sake of your babies!!!
Comment by Laura — Apr 1st 2010 @ 2:01 pm
@Laura
Good luck to you in your quest! We are all on one for the sake of our childrens health and happiness. My parents often tell me that God won’t give us more than we can handle and I’m guessing that all of us that are parents to ADHD children must be damn strong people!

My son was increased from 18mg to 36mg of Concerta today so I’m anxiously awaiting the end of the day to find out how school went. I’m also waiting for the neurologist to call me back about starting him on Intuniv so I can observe the side effects during Spring Break. I’ll post more once I see how it goes!
Comment by Laura P — Apr 1st 2010 @ 2:30 pm
we are on our fourth day of intuniv and I am seeing a difference already. I just hope it keeps improving. I am giving it to her at 6:00 at night and she goes to sleep by 8. Her mood seems to be improving and her ability to control impulsive behavior. Not alot but enough to see a difference. Her appetite has not been affected so far. I will keep updating.PRAY!
Comment by christy — Apr 1st 2010 @ 4:19 pm
@ Laura,

Hi and thanx for all your kind words ! we also had stopped intuniv after a 3 week trial. My son was so emotional, tired, and completely unattentive and unfocused in the classroom ( the teacher actually found him on the floor one day just sitting there not knowing what to do) prior to his “official” diagnosis he saw a behavioral specialist for over a year and we worked very hard at home with home to try and combat some of his behaviors but in August of 2009 he was diagnosed and he began taking strattera (thankfully he had no side effects other than snapping his fingers obsessively for a week) but he still had impulsive behaviors at home and school so we tried intuniv and as i mentioned it just wasn’t the right med for him. Now he is on his 5th day of Concerta 18mg and things seem to be going well. He is on spring break so I am anxious to see how he will do once he returns to school. However, he has a huge project due on Tuesday and has been working on it a little each day without freaking out like he used to. He also is eating just fine, which is pleasing to me because he in on the thinner side and very active and is in Karate and baseball. I also notice he seems do be doing better socially. He is the kid in the neighborhood that annoys all the other kids and doesn’t want to play by the rules . I am keeping optimistic and positive and take great comfort in this website . Michelle
Comment by Michelle — Apr 1st 2010 @ 10:02 pm
Hello to all parents out there taking it one day at a time. My son is twelve years old now and was diagnosed with OCD at six years old and ADHD at nine years old. He currently takes Prozac for his OCD and Concerta (extended release) for his ADHD. He has developed various tics in the last year though only one tic would be active at a time. Tics included throat clearing, humming, mild skin tearing around nail beds and finally, blinking. As the stress of middle school and OCD has progressed he now experiences all of those tics with the addition of grasping on the thumb of each hand and pulling on the joint. A very obvious bruise and callous have developed just above each thumb. Needless to say, other kids are asking questions, teasing and bullying him about all of his tics. His psychiatrist recently started him on 1 mg of Intuniv to assist in the prevention of the tics at school. Hopefully, over time he could stop the Concerta all together and use Intuniv for both ADHD and tics. He’s only been on Intuniv for three days and at the lowest dose. Haven’t seen any differences or side effects yet. My biggest worry outside of it not helping his tics, is the unbelievable expense. We are currently on the sample starter kit, but my insurance doesn’t even cover this drug. Anyone else out there with similar issues (OCD and ADHD)? I have no other mom friends with kiddos that have issues of this magnitude and it can be lonely. Curious if anyone out there has dealt with similar symptoms and courses of treatment. We do have a psychiatrist that I trust and a psychologist as well.

Thanks for listening! Shannon
Comment by Shannon — Apr 2nd 2010 @ 10:25 am
Hi Shannon! It is heartbreaking when your child stands out and is ridiculed by others because of his tics. This site has been of great comfort to me and I find it very soothing to read other families stories and try and take and give advice when I can. Our insurance also did not cover Intuniv nor did it every cover any med my son uses. We have paid out of pocket since we began meds. It is so frustrating and puts us in a financial bind at times but we do what we have to. ALSO, when we started to sample kit of Intuniv it came with a card that needed to be activated with Shire ( the drug manufacturer) that would take $50.00 off your first refill. Check with Shire and see if they can provide you with the card or coupon. I hope all works out for your son and your family. Good Luck ! Michelle )
Comment by Michelle — Apr 2nd 2010 @ 2:30 pm
Michelle, thank you so much for sharing your financial struggle with me. The money aspect of caring for our kids with medications and specialists can be an incredible burden. But, as you said, we are doing what we have to do. I love my son so much and truly treasure every day that we spend tackling these issues as a family. My son is my inspiration as he fights the “worry monster” every moment of his life. I can tell everyone that my son could never be a “kid” before meds. He spent years afraid of absolutely everything from bugs to weather to things that weren’t even likely to occur. Then, the ADHD became more evident. Though the tics are bad, even at 12 he sees how much better life is for him with medications.

Its great to know Iam not alone!!!! Will post as we go up in dosage on Intuniv. Thanks again and prayers for all. Shannon
Comment by Shannon — Apr 2nd 2010 @ 4:44 pm
@ Shannon – my son developed the blinking and facial tics being on different meds. Intuniv did not help his tics at all. I did find online at NativeRemedies.com a hollistic med called Tic Tamer. I’ve been giving it to him for a week and it’s working! I don’t normally try hollistic stuff, but it’s so awful to watch and honestly I’d try anything at least once. The kids at school were starting to make comments, etc. So, I feel your pain! Breaks my heart. He’s still blinking a little, but not excessively like before the facial part stopped completely. It was $42 with shipping and tax, but so far I think worth it. It has no taste and you put 5 drops in juice or right on the tongue. My son says it leaves a bitter taste in his mouth, but I tasted it and didn’t get that. I’m also not taking it 2x a day.

Hope the Intuniv helps for your son! It is expensive…I went to the Shire website and found a $25 coupon, but that’s all they were offering a few weeks ago.

Good luck! Let me know if you try the Tic Tamer and if it works for you!

Renee
Comment by Renee — Apr 2nd 2010 @ 8:46 pm
Oh and also, just a side note – you can take the Tic Tamer with their other meds. I checked into it and they do not contraindicate eachother.
Comment by Renee — Apr 2nd 2010 @ 8:47 pm
Hi everyone, I hope you all had a wonderful spring break !!! I am writing today very, very discouraged !!! We started our son on Concerta 18 mg 10 days ago and today was his 1st day back to school. As I dropped him off this morning I had such high hopes and a positive attitude. I was met in the parking lot by his teacher stating “today was his worse day ever” he couldn’t even focus in computer lab. I am awaiting a call from his pediatrician to see what in the world to do now ! This is such an incredible roller coaster and I cannot fathom how my poor baby feels ! Please if anyone has had any experience with this med and its effects, I would love some feedback and advice. Thanks !
Comment by Michelle — Apr 7th 2010 @ 4:01 pm
@Michelle, hang in there! I am so sorry to hear about your stress level with regard to your son’s start on Concerta. Has your doctor talked about ramping him up to 36 mg? My son started out on the 18 mg dose for 30 days then moved up to the 36 mg dose after thirty days. The higher dose was a great fit and he has continued on that dose for the last year. My son has OCD and ADHD. He did develop a few tics, but not sure that it’s not due to the OCD. Consequently, he is now taking Intuniv for the tics-although it is typically written for ADHD. The tics have improved tremendously!

So, my ultimate advice is to hang in there. I know how painful it is to watch your child’s self-esteem plummet. I also know what a failure I have felt like as a mom. My son is now 12 years old. He was diagnosed very early with OCD, 6 years old. I have seen a lot Michelle. Have faith in yourself and your son. You can do this and so can he.

My son has a special education IEP. Though he is actually higher than average IQ, his emotional struggles with both disorders more than qualified him for help. At the very least, speak to his teacher about “movement breaks” during the day. KIds with ADHD truly cannot help their need to move both physically and mentally. As well, providing him with a fidget to keep in his pocket or desk will help. Let me know if you would like more suggestions. Have tons of information should you be interested in ideas for school and home!

This is such a hard road for us as mothers and it is exhausting. Take care of yourself and communicate with your pediatrician as well as the teacher. Very best to you and let me know how you are both doing!! God Bless-
Comment by Shannon — Apr 8th 2010 @ 10:50 pm
Thank you so much Shannon ! Your post made me feel so much better ! I spoke with my son’s pediatrician yesterday and spoke with our pharmacist at length as well. He was brought up to 27 mg starting tomorrow AM and I am hoping and praying this will help him. The poor kid his self esteem is so low right now. We just had a discussion about all the successful people who have ADHD (baseball players are all he wanted to hear about) lol . He has a fantastic teacher and my husband is so supportive and hands on so we are blessed in so many ways. It is funny that you mentioned a fidget because he has a ball he squeezes while he is at school. He is close to 10yrs old and we have waited to medicate for quite sometime, we as I am sure you do work very hard at home, he had one on one counseling for over a year and he is active in karate. I take such great comfort with all the support and advice I am given by you and all the wonderful parents on this site ! Thanks and have a great weekend ! Michelle )
Comment by Michelle — Apr 8th 2010 @ 11:00 pm
So my son is doing well on the 36mg Concerta – we started on 1mg of Intuniv two days ago. His neurologist told me it can take up to 3 weeks to see the affects of the Intuniv and to be patient. I’m giving it to him at night so we dont have to worry about the fatigue factor. He did wake up with a headache this morning but I don’t know if that is at all related. Overall, he is not happy that he has to take meds but takes them anyway. I think when we find the perfect combination and he can just enjoy his life without worrying about his behavior so much that he’ll see the medication as a blessing in disguise as I do!

@Michelle – hopefully the doc bumped up his medication to a higher dosage. It’s all a game we play trying to find the right combination – hang in there…we’ll all get there eventually!
Comment by Laura P — Apr 9th 2010 @ 11:28 am
@ Laura P

Thanks for your post. He began 27mg today. He also has ODD and those behaviors seem to be much more extreme the last few weeks, but prior to the meds the ODD behaviors could reach their boiling point too. He did tell me he felt as though he could concentrate better today (but I think he may be sick on the 50 questions and just appeases me) I know that it is hard to find the right meds and then experimenting with dosing is so trying for him. I am just glad I have the support and understanding of all the wonderful parents on this site, Please keep me posted on how your son does on the intuniv. It wasn’t the right med for my son but I hear alot of kids who have experienced positive benefits from it !
Comment by Michelle — Apr 9th 2010 @ 8:50 pm
My daughter has tics and ADHD and she is a very skilled soccer player. She started taking Intuniv in October increasing to 3 mg by December. It seems to be working okay regarding her tics and ADHD but her intensity on the soccer pitch has declined tremendously. This has become quite depleting for her as she all of the sudden is not getting playing time. Has anyone else recognized an adverse affect of Intuniv on athletic performance?
Comment by Kathi — Apr 11th 2010 @ 7:51 pm
@ Kathi

Nothing regarding athletic performance here. Because of his ADHD and social issues, my son decided he no longer wants to play team sports. I’m just hoping that when we find the right combination, he may change his mind. In the meantime, it is roller skating, swimming and golf lessons for him!
Comment by Laura P — Apr 12th 2010 @ 2:21 pm
Hi everyone,

Today seemed to be a real good day for my son. He woke up pleasant, yelled I Love you mom when he left for school, when I picked him up from school he was still pleasant, came in and had a snack and started right on his homework ( he NEVER does this) and then went out to play (with no problems with the neighborhood kids) he ate dinner and still is quite pleasant … this is a great day for all of us ! The weekend was really tough. His impulsiveness seemed to be in overdrive and purposely annoying everyone and being sooooooo defiant ( although his does have ODD) I am ecstatic about the homework! I am now holding out hope that the Concerta is finally start to work for him. I am going to follow up with his teacher on friday and hope and pray it is something positive for a change. We still haven’t started the Melatonin and his sleeping patterns are still affected but not as bad as I anticipated. We would love to have move days like these!
Comment by Michelle — Apr 12th 2010 @ 8:03 pm
Michelle~

So glad to hear you are having such great success on Concerta-we’ve been fortunate with it for 5+ years now. The only issues are appetite and sleep, but they moderate after a couple of months.
The melatonin really does help for sleep-give it about 2 hours before you plan on bedtime. Its not a heavy sleep aid, it just gives them that little kick to relax. We’ve had zero trouble with melatonin.
Your little guy deserves more days like this so everyone can the wonderful person he can truly be!
V
Comment by Veronica — Apr 12th 2010 @ 8:57 pm
Michelle, great news! I am so happy for you both. We all need those days sprinkled in with the reality of our kids issues. I remember the first time my son had just exactly the same kind of day. A day I thought would never come. The good news is this: He CAN have good days!! Always better when we run a few together, but I will take them whenEVER they arrive. Here’s to more of those days to give both our kids and us the energy for all the other days!
Comment by Shannon — Apr 12th 2010 @ 9:19 pm
Btw, we have been using melatonin for sleep problems for a number of years. My son started when he was six. If his anxiety is not too pronounced, then it truly does help. I will say that if you use it daily, over time he will adjust to the dose and it won’t be as effective. He uses the kind that is sub-lingual. It dissolves quickly under the tongue and seems to work much faster than the kind you swallow. Gets to the bloodstream faster when administered that way. Just a thought from our experience. Shannon
Comment by Shannon — Apr 12th 2010 @ 9:31 pm
Kathi-

My son is very active in sports. When he first went on intuniv I experienced the same problem with his level of intensity. He wasn’t as sharp as he usually is and seemed sluggish.

Make sure you daughter is taking plenty of fluids to stay hydrated. That will help alot. I realized my son was becoming dehydrated which increased the lethargy.

Once your child gets used to the medicine it should get better.

Michelle – I am so extremely happy for you and your son. Just having a good day gives you and your son hope. I was going to mention earlier but I have been extremely busy lately, you generally have to give Concerta two weeks to get the full effect. It can make a child aggitated when they first start.

My son was on Concerta for a long time then he developed tics. We switched him to Focalin XR because it is supposed to be a purer form of Concerta in order to reduce tics. He has been on Focalin for several years but started have severe tics and we tried a few things before we found intuniv.

He is currently on 3 MG although it is helping with the tics, they are not totally gone. We have had to add a 5 mg supplement of Focalin during the day because he was having trouble in school. He got two Detention slips in a weeks time.

He seems to be doing fine now.
Comment by Kim — Apr 12th 2010 @ 9:59 pm
ok i am am my wits end! My 8 year old daughter has been on intuniv for almost 3 weeks we are at 2mg and the first week we noticed a difference and now i know it is better but it hasnt helped the CONSTANT talking and i do mean almost non stop. I is driving us nuts any suggestions?
Comment by christy — Apr 13th 2010 @ 8:30 pm
Hi Christy,

Glad to hear the Intuniv is working for your daughter although she is constantly talking. Perhaps you should call her pediatrician or shire ( the drug manufacturer of Intuniv) I did not read that excessive talking was one of the side effects, however meds effect kids in different ways. I will tell you that finding the right med is such a huge challenge, worry and so stressful. I am still not sure we have found the right med for my son. Things seem to be going better at home with his dispostion and he is doing he homework without a struggle but we will find out how things are going in school at the end of the week. He is now on his 3rd med so hopefully this will be the right fit. Is your daughter talking at school as well? I hope all works out for your family.
Comment by Michelle — Apr 14th 2010 @ 9:54 am
Hi, my name is Michelle O. and I found this site when looking up info on Intuniv, I think it is great and very helpful. My 13 yr old son just started Intuniv 1mg last night. We saw a psychiatrist early this week for some issues he’s been having. He has ADHD, and with this recent visit, was told he has an anxiety disorder. This morning he let me know he wasn’t feeling well, he didn’t look well either. Said he had a bad headace and just felt sick. Also said he didn’t sleep well, which that was just one of the reasons they decided on Intuniv, he was already having sleep trouble due to the anxiety, so they thought this would help the ADHD and the sleeping issues. He still went to school and just waiting for his lunch time to call and see how he is feeling. They also wanted to put him on Prozac for the anxiety but I just couldn’t do that. It breaks my heart to have him on meds like this, and it really hurt this morning to see him not feel well because of it. We are going to hang in there for a little to see what changes come. But I did give him his med last night late, 9 pm. So I am wondering if giving it early will help. Also I did read a prev comment that it had been given at dinner. I read that it should not be given with high fat meal (not that I feed my kids fat , but just wondering what kind of meal is being given. And does anyone give their kiddos headache med for the headaches Intuniv can cause? That was my first thought this morning but wasn’t sure it would be ok. Would really appreciate some info, again this site is great and thanks to everyone!
Comment by Michelle O. — Apr 14th 2010 @ 12:45 pm
Hi Michelle O.,
I hear you on all fronts, but I do want to give you some encouragement. My son has ADHD, OCD and a sensory processing disorder. We waited as long as we could with meds as I was horrified at the thought of needing medication the rest of his life. Truthfully, the Prozac was a lifesaver for both his situational anxiety and his OCD. Wish I had done it years earlier. For him, it changed his quality of life. Allowed him to be his authentic kid self! I had no idea it could help so much. He has been on it for three years now-waited for three yrs before that! Started Intuniv about a month ago. My son has also struggled with sleep issues for years. There is no magic bullet with that one, but i will say the Intuniv seems to have helped overall. He does take it in the morning and he is now on 2 mg. Brace yourself, he also takes Concerta. He really needs both unfortunately right now, but I pray after puberty we can change some of the meds.

He also sees a wonderful psychologist regularly to help deal with all of the issues. She has been able to give him peace of mind and great coping techniques. Both psychologist and psychiatrist have been instrumental in the vast improvement in his quality of life. Most of all, they both have enabled my son to be instrumental in the improvement of his life!

Hang in there as all gets better with each day. I do give my son ibuprofen for the occasional headaches he gets.

Shannon
Comment by Shannon — Apr 14th 2010 @ 1:28 pm
@ Michelle O

Hang in there. My son’s neurologist specializes in ADHD and he said that the Intuniv can take 2-3 weeks to see a difference. So, in light of that, it may just be that he had a headache for some other reason this morning. I wouldn’t assume it to be because of the Intuniv unless it continues. I try to give my son his 1 mg around 6 or 7 pm. We have been taking it for a week now and haven’t seen a huge difference in his impulsivity but his facial tic seems to be lessening! YAY! As for headache’s, if my son gets them, I give him children’s tylenol – I never really know when he’s being honest about his ailments because he’s only 8 and tends to have whatever illness I seem to have at the time (which truly pisses me off)! But your son is older and I’m sure really knows what a true headache is. I don’t think there’s anything wrong with treating for the headache along with the meds but go ahead and give the doc a call to double check! Good luck and hang out here on the site – there’s a lot of great insight from all these parents! Would love to see some dad’s chime in though!!! HINT HINT HINT!!! LOL
Comment by Laura P — Apr 14th 2010 @ 1:28 pm
Shannon & Laura P: Thank you guys so much. It always helps to hear about these things from those that are going through it! That was one of the biggest concerns I also had, not wanting him to be on meds the rest of his life. I just didn’t want to jump right into meds, makes me nervous. But the ADHD he has had for a few years and it has gotten better with age, but his school is still somewhat suffering. Thats why I chose to try the Intuniv over the Prozac. I figured lets try one thing at a time. He will see a therapist next week, I am hoping she can really help with his anxiety. Thanks for all the encouragement. Keep you guys posted!
Comment by Michelle O. — Apr 14th 2010 @ 2:46 pm
@Michelle O. I wish you and son well with Intuniv. I have heard some positive feedback from other parents with kids on Intuniv. Keep us all posted on his progress !

Michelle )
Comment by Michelle — Apr 14th 2010 @ 3:20 pm
Michelle O.-Definitely a good point with trying one med at a time. That is how we started out and over time added meds as it became absolutely necessary. Smart move!

Should also add that my daughter suffered with a diagnosed, non-specified anxiety disorder for several years all through elementary school. She is in high school now and amazes me everyday! She truly has become comfortable with herself as well as the unpredictability of life. Though no longer struggling, she will always need to be aware of how she is “hard wired”. As they mature, I’ve found they listen to their bodies and their minds significantly better. My son has needed extensive therapy over the years to learn to manage his OCD. He has learned so much about himself and how to help himself when he feels overwhelmed. Your son will do it too!!

The hardest part of everyday is trusting my son to be okay and take care of himself. But he can do this at school and he needs to know that I trust him. You will get there Michelle, some days it doesn’t feel like it though. Keep us updated! Prayers for you~
Shannon
Comment by Shannon — Apr 14th 2010 @ 6:52 pm
@ Shannon, if u don’t mind can you tell me some of the symptoms of OCD? My son had extensive testing at CHOP for several disorders and he was diagnosed with adhd and odd but sometimes i think he does have ocd … he hyperfocuses on one thing and will pester and nag to the point of giving us a migraine … his negative perisistance is EXTREME ! Thanx so much ! michelle
Comment by Michelle — Apr 14th 2010 @ 7:20 pm
@Michelle O

Happy to share my experiences with my son. His OCD is not what most people think of; the can’t touch door knobs, germ issues, etc. He is more complicated. However, the obsessing (focused) on one thing is a hallmark of OCD-and my son has done a LOT of that over time. Checking is also a common trait of OCD. For instance, when he was six and seven years old, he used to call me on my cell every ten minutes when I was at the grocery store to make sure I was okay. Yes, every ten minutes. At that point, I was the focus of his OCD and checking. Exhausting. Frequently, he will get a thought in his head and he simply cannot let go of it. OF course, they are never good thoughts. It can be associated with something scary he might have seen or something as simple as seeing a bug in the house. I often hear, “I can’t get the (fill in blank) out of my head.” The thought will just torture him at times. However, it’s not like that every day. He goes in cycles with the really tough stuff and there is minor stuff every day that I don’t even think about anymore.

Lastly, lets not leave out the puberty factor. The race with hormones at their age creates just as many problems for boys as it does girls. Particularly when your son is taking any kind of medication. The growth, hormones, etc affect all kids but ours even more so. All of his doctors say what a balancing act it is during this time. They also seem to indicate that he will likely level out and not see so many drastic downs after puberty.

Really good therapy will help him learn (and you) how to manage the “verbal assault” that drives you nuts. I can only imagine. When my son did the talking about one thing/obsessing I found it so frustrating. Intellectually, you have to know that he cannot help it. If it is OCD, they truly cannot help the behavior for the most part. Their brain is insisting that they continue the behavior in an attempt to “feel better.” They don’t stop because they really can’t find resolution. Non-stop merry go round.

Patience and learning more about OCD is your best strategy. And, for my son it was Prozac. It is one of the two most rec meds for OCD in kids-Zoloft is the other. Prozac has been around for so long and I felt better trying that one first. It changed our lives. He still struggles regularly, but he is able to stop himself more so than not. He feels more “in charge” of his thoughts most of the time as well.

Make sure you take a few minutes for you to talk to the therapist when your son goes in as well. Eventually, I started seeing someone to manage all those guilty, angry, frustrated, sad feelings that can overwhelm those of us on the front lines every day. It has helped so much. Gives me much needed perspective!! And now that I have found this group, I feel connected to other parents who struggle with many of the same issues. Thanks to all!!

Sorry so long!! Shannon
Comment by Shannon — Apr 14th 2010 @ 8:08 pm
OK it is me again just want to say that i thank everyone for their input, my daughter has always talked alot but i didnt realize that ocd could be like described above because my daughter does sound alot like that. she is constantly talking and always has and once she focuses on something it is all i hear and when asked to be quiet she says she cannot because she cant get it out of her head unless she says it. She takes notes on every little thing that happens at school to read to me on the way home from school and after we get home.( and i do mean every detail of the day!) I love my child but the constant talking gets me so frustrated and yes i know it does her too but i feel like a bad mother when i tell her to hush i get migraines alot due to the talking and my frustration,Is there anything i can try to control the talking?
Comment by christy — Apr 14th 2010 @ 10:27 pm
michelle, yes my daughter talks at school too and they have been made aware of the problem.I give her intuniv at about 6 at night and her bedtime is 8. She sleeps most nights all night long. The key i think to less headaches is keeping them well hydrated!
Comment by christy — Apr 14th 2010 @ 10:30 pm
Author: Shannon
@ Christy: “Controlling” the talking is soooo hard! Don’t know if she is taking any meds other than Intuniv, but as I mentioned earlier, Prozac was a Godsend for us. The Prozac for his OCD along with Concerta for ADHD and Intuniv to help with tics that are likely due to the OCD. That trio of medication has truly given my son a new lease on life. Now, I will say that it did take us a long time to find the right combination. And, the right diagnoses. If the talking is OCD driven, there is no way to stop her realistically. Behavior modification might help some, but sounds like you will need something else to help her help herself. A good psychologist will also help-it did for us. Have you talked to your doctor about the incessant/obsessive talking? It’s wayyy past being chatty, i know! A good evaluation will tell a psychologist the nature of the talking, where it likely originates and hopefully, behavior mods that might help.

I feel for your daughter, as my son has described vividly to me the drive to fixate on a topic. It’s very frustrating for the kids. Not to mention the mom’s who just need a break from whatever the issues are that day! Seems like there is more to her story. Hang in there Christy. This is hard and unfortunately, it is supposed to be hard. Who our kids are is complicated. I think I’ve been tired since my son was born! You sound tired too. It does get better. But, I do remember thinking that I couldn’t do this day after day. Loving them is our first line of defense…..and the reason we don’t give up. Keep us posted.
Comment by Shannon — Apr 14th 2010 @ 11:00 pm
Hi all. My son is 13. Back in preschool, he was echolalic. He saw a host of professionals and was thought to have something from Asperger’s to ADD to Autism.. “in the spectrum” basically because he was too young to diagnose. We got early intervention for him, worked with him and put him on Adderall. In months the improvement was so great that he was taken out of the special ed program at school. But in the span of about a week, he developed tics that went from slight head twitches to complete stuttering and inability to speak coherently. We took him off at the advice of his teacher and neurologist. And he did really well without it. He learned cognitive skills to help him with his attention issues.

A few times over the years, we have gone back to meds. Tried Concerta and Strattera in low doses. They worked but he still was able to manage and we stopped them. Some of his tics came back and stayed with him. So last year we were giving him Clonodine because they were bad enough to make him stand out at school. Kids were walking behind him in the halls, “Hey Tic Toc”.

The barometer we have used for our son has been his grades. He’s nearly a straight-A student. And he’s very respectful to adults and other kids. He’s a real sweetheart. But I feel remiss in using those indicators alone to assume that he’s coping. I think he’s been putting on a good front.

He deals with fear, anxiety and depression. He is the most unorganized kid I’ve ever seen. Thank God his teachers work with him. He’s so socially awkward. He can not stay focused. He has no impulse control. If he’s anywhere near me when I turn the iron on, he just has to touch it real quick. I think he feels like a total failure because of the stress he feels socially from his peers, his inability to even remember to bring home his homework half the time, etc. He usually makes 100%. When he doesn’t, he’ll make an F. No in between grades. If he makes an F, those were days when he sat in class and checked out, hence had no idea what he was doing on the test. Those F’s are becoming more frequent. Hence he seems more stressed, and is harder on himself. He’s spiraling downward.

We see his pediatrician on Saturday. The soonest we could get an appt. with his neurologist is not until June. I want to ask about intuniv. He has trouble going to sleep at night and takes Melatonin. I’m hoping this med helps him. I’d love some feedback as to whether intuniv has addressed the specific symptoms my son has.
Comment by Janice — Apr 15th 2010 @ 8:54 am
@Janice

Hopefully you will receive some positive answers from your sons pediatrician. These disorders are so difficult for kids to handle and then to be called names by other kids is so heartbreaking. Hang in there and keep us all posted on how things go. GOOD LUCK ! Michelle N.
Comment by Michelle — Apr 15th 2010 @ 9:34 am
@Janice

My heart is breaking for your son and the kids at school being mean! I just keep telling my son that kids are mean and if what they are saying isn’t true then it doesn’t matter what they say. But if they are making fun of him for his tics, then it is true so it is truly hurtful! Kids just don’t understand and make growing up so difficult for each other. It sounds to me like maybe the Intuniv might help for your son’s tics but he has other issues that you need to have addressed with a psychologist. Behavior modification and medication seem to be the right idea for him. I would try to remember that when he’s taking meds and you see a positive difference, that you need to KEEP him on the meds because they are the only reason why you are seeing the difference. I know we all want our kids to be better and not have to take meds forever but it is a brain condition that doesn’t necessarily heal itself. With your son being 13, he’s also going thru puberty so that’s another issue. Your pediatrician should be able to prescribe the Intuniv and if his Neurologist can’t see you for that long, find another one or let them know the urgency and about the tics – that usually will get them to find an open spot sooner! But please, if you haven’t already, find your son a psychologist to work with and see if that helps also! Good luck to you!
Comment by Laura P — Apr 15th 2010 @ 9:40 am
Thanks Laura and Michelle. We are also reading with him every night to help him grasp social concepts and challenges that teen face. Like homeschooling for social issues.

- Chicken Soup for the Teen Soul
- What’s happening to my body?
- Don’t Sweat The Small Stuff For Teens

We’ll be getting more because he is relating so much and seems to be getting the fact that all teens go through awkwardness and he’s not so alone.

I’m so hesitant to ever put him on an anti-depressant because of the risk of suicide in depressed teens. That almost happened to my brother when he was a teen and put on meds.
Comment by Janice — Apr 15th 2010 @ 10:02 am
@ Janice

That’s great that you are doing that with him! Please don’t worry so much about the meds – every child is different and if you are so involved in his life and you get him a psychologist to talk to, he should be okay. Your first step is a true diagnosis and then you can get him books about that. I know it helped my son to read about ADHD. Of course now he thinks he can use ADHD as an excuse for everything but I keep telling him it is not an excuse he’s allowed to use – he takes meds and they help HIM to make right choices and act appropriately – he just needs to help the MEDS work to their fullest potential! He seems to get it that way! I’m still a few years off from puberty with him though (thank God) so I’m sure by then I’ll be back on here with much of what you are going thru as well. My son’s father passed away when he had just turned 6 and before he was diagnosed with ADHD so I’m sure that will come back to bite us in the hiney eventually!!! This is a great board and so many helpful people – thank you all!
Comment by Laura P — Apr 15th 2010 @ 10:09 am
Author: Shannon
@ Janice
My son is 12 years old and I feel like most of his life has centered around the “issues” and not being a kid. As I mentioned in previous posts, Prozac was a huge help for my son. (as well as concerta and intuniv) Truly, I am of the opinion that a highly qualified psychiatrist or psychologist can diagnose your son’s impulse issues, compulsive/attentional issues as well as draw connections between these problems to find the best course of meds. I’m with Laura P, if you find a med that works, stick with it. Your pediatrician can suggest a psych consultant for you as well.

Hardest part is the toll all of this takes on your son. My son’s tics have improved vastly with Intuniv and kids have stopped making fun of him. Therefore, his self-esteem is starting to recover. The grades have been the same for us as well. However, that too is improving finally (after years). The right combination of meds was key for my son and likely will be key for yours as well. But the even more critical factor was the presence of both a psychologist and psychiatrist in his life. We’ve seen the same psychologist for five years. They have a strong relationship. Our sons will likely never really blend into the crowd-but the psychologist has helped both my son and I see that it is okay. Yes, it is harder, but it is okay.

Finally, with the addition of those sorts of professionals you should consider special education services for your son. For my son it has really consisted of an aide to make sure he is organized at school and helps him pick up the slack when he is going through a rough patch. As well, the school provides counseling once a week as a pull out program. Awkward at first for him, but he has become close with her as well. They work on peer interaction, handling bullying, and the anger that results from feeling so different. My son’s label is “Emotional Disturbance”-sounds awful but it isn’t, for the OCD. The system has not yet caught up with diagnoses and that is just a big umbrella where most emotional stuff falls under the laws governing spec ed services. He also has a “Other Health Impaired” label for his ADHD. In this case, that’s where so much of his support classroom-wise comes from. Check out IDEA on google for in-depth info on these laws.

The best advice I’ve gotten from both psych’s was to try to let go of being sad about the way things are for him. Instead focus on what things ARE and how he will grow in the future with these struggles. And truly, I have seen growth and you will too. Janice, hang in there and keep us posted. Prayers for you and your son!
Shannon
Comment by Shannon — Apr 15th 2010 @ 10:24 am
Hi everyone,

WOW am I discouraged AGAIN ! I emailed my sons teacher this morning to follow up on his week and again no positive news to report. He has again had a very rough week, unable to sit, focus, his impulsive control is very poor, etc. I took my daughter to the pediatrician for strep throat and asked to speak with my sons ped while I was there. I explained everything to him that the teacher was reporting to me and he even looked discouraged. It took all I had not to burst into tears in his office. He wants me to bump him up to 36mg and see how that goes. I just feel that NOTHING is helping my son at all ! I am not looking for a miracle nor do I expect meds to help every issue he faces but I was hoping it would atleast help him function better than he has been. I am seaching out a child psychologist and we continue to work very hard at home with him. I just feel so sad for him but he seems so unaffected by anything. He truly does not realize how difficult his behaviors can be. Has anyone had any of these experiences with CONCERTA? This is his 3rd med and I am starting to feel as though nothing is going to help ! Michelle N.
Comment by Michelle — Apr 15th 2010 @ 1:18 pm
Hi to everyone:
I posted recently about by 13 yr old starting Intuniv, his first day was a little hard because he woke up not feeling well. His headache lasted all day, when I picked him up from school yesterday he looked worn out. But today it much better, back to his old self. So nt sure if there was something else going on yesterday or if it was his body adjusting to the Intuniv. Today is 3rd day of med, took some of you guys suggestions and started giving it to him earlier, 6pm. Sys he slept good last nite, which hasnt happened for a while. Again, not sure if its the med or if it was because he was so worn out from the nite before. Reading a few of the other comments on OCD left be wondering if he could possibly have this. He was diagnosed with having an anxiety disorder-panic attacks. But every now and again he will say things like “I cant stop thinking about…” Never thought about OCD, now its not something he does everyday. But it has happened. Wondering if it could be mild??? He will see a therapist next week for the other issues so will definately bring it up. Thanks for all you guys comments!!
For Michelle N. I am sorry to hear about your son. I can understand how frustrating it is for you and him. I havent had any experiences with concerta but will definatley keep you guys in my prayers
Comment by michelle o — Apr 15th 2010 @ 7:56 pm
I have a 12 year old son with ADHD, and early onset puberty. The impulsivity has been the most difficult thing…and I learned that it takes a drastic increase with the onset of puberty. He’s had a low voice since before 10 years old… he shaves now and then…and he’s in 6th grade!!! Finally finally finally we are addressing the impulsivity. I have been the reluctant one. We are on week #2 of Intuniv, and I can absolutely see windows of positive change. Week #1 he was exhausted…but OK. He would practically fall asleep at 5:00pm though. Our psychiatrist said the peak effects usually hit 10 hours after taking it. We were giving it to him at 7:00am. We now are giving it to him late afternoon, so the peak sleepy time should hit in the middle of the night. I was nervous about moving into week#2 with the increased dosage, but so far so good. He called me from school the other day to ask if he had indeed taken the impulsivity medication, because he was feeling a little impulsive. I gave the school nurse a heads up, and they offered to let him run around the playground before his next class. He said that night he thought maybe the medication wasn’t working. I said, “heck…you even recognized the FEELING of impulsivity. You CALLED me, instead of acting out. Sounds like it’s working to me.” Now THAT is progress.
Comment by Katy O — Apr 18th 2010 @ 9:41 pm
Hi Katy,

That is great news. The fact that he recognized that he was feeling impulsive. I am glad the Intuniv is working for your son, we didn’t have much luck with it. So far we haven’t had much luck with anything. My son is on his 3rd med and his 3rd dosage increase. It has been a really rough road and I hope to report some good news soon. It is such a challenge for the entire family. I am trying to be positive and your post gave me some hope. Thanks and continued success to your son !

Michelle )
Comment by Michelle — Apr 18th 2010 @ 10:39 pm
Hello,

My son is 10 years old and is diagnosed with aspergers, auditory processing dysfunction, sensory integration disoder, and add. He is in 4th grade and signs and symptoms of depression were more apparent and the psychiatrist started him on fluoxetine. This completely changed his life. He was more sociallable, less anxious,less fearful. His eye contact had improved significantly and I could defenitly tell an improvement in his thought processes and in his speech. But now that this has improved we now have the problem of finding the medication to help his severe attn deficit. He is not hyper just cannot focus especially when it comes to math. We started intuniv in January 2010 and I have had mixed feeling about it because of the extreme exhaustion it has caused. We had increased him 2mg and he was on this dose for about 30 days but I decreased him down to 1mg because of increased behavioral problems at school and his attention was worse. We have a follow up appointment this Thursday. We were considering changing to Strattera but the doctor was going to research to see if it would be ok to take with fluoxetine. Has anyone had any luck with strattera and would you know it is ok to take with fluoxetine (prozac)?
I admire all of the parents who standup and advocate for there children who have any form of autism. The public school system should become more informed about this growing epidemic and should make appropriate accomidations for our children. I have learned that I cannot force my child to live in my world I have learned to live in his. And I am grateful that there are medications out there that can make our lives better!!

Dahlia
Comment by Dahlia — Apr 19th 2010 @ 2:59 pm
@ Dahlia,

I loved the statement in your post about not forcing your son to live in your world but you have learned to live in his. What beautiful words from a wonderful mother !!!! I wish you luck in your quest. Unfortunatley I am not sure about the mix of strattera and fluoextine. I will tell you that we have a great pharmacist and he is so experienced in answering alot of our questions (sometimes I feel he may know more that the pediatrician) If you trust your pharmacist ask and see if they can give you any advice on the two meds together …. Have a great night ! Michelle N.
Comment by Michelle — Apr 19th 2010 @ 6:33 pm
This site is so inspiring, when I get and can take the time to read all the latest, there are SO many more situations that have so many bits and pieces that are relevant to my son. Each child is so extraordinarily different. I did, however, notice several mentions of OCD which seemed to talk about similar symptoms to what my son has (or had, before Sertraline). The constant worrying about ME, and how I was doing while he was at school – so much so that he could not concentrate on schoolwork, and when he was on visitation with his dad (we divorced ugly), and nightmares about me or himself or his sister being KILLED (video games maybe if you only look at the most obvious thing) brutally, and worrying about me home alone having someone break in and kill me, etc. I took him to a therapist and she determined he had PTSD, (post-traumatic stress disorder). Once she said this, I googled it and OMG, everything kinda came full circle about what I thought was simple anxiety. His whole poor little bitty childhood was terrible, constant yelling between the parents. He told me of childhood memories where he would try to come downstairs to stop the yelling (he must have been 3 or 4), but that a monster would take him back upstairs and make him stay in his room. I think this was an ANGEL. TRULY I do, and I thank God. Sorry to bring religion into this conversation, but actually, I don’t know what other “entity” would safely take him AWAY.

ANYWAY, to those who have been OCD “labeled”, I wonder if my son has OCD, not PTSD, or if yours vice versa. I am very sad that I got a letter today from my son’s neurologist saying he was leaving the company due to family reasons.
Comment by Christie — Apr 19th 2010 @ 8:15 pm
I recommend watching the movie “Front of the Class”, a hallmark movie that I stumbled across one Saturday night recently when my children were on visitation with their father. It is about a child with Tourette’s, but it made me boo hoo so hard that i ordered it for about $27 once shipping and handling. My kids LOVE it, and have watched it about 10 times since I got it about 6 weeks ago. It is totally worth the watch! It is about a child with a disorder, that he got made fun of over, and tics, and he dealt with it, and grew up with it, and educated people about it, (true story, by the way) became a teacher of the year after many struggles, BECAUSE of it. IT IS ONE OF THE BEST MOVIES I HAVE EVER SEEN, AND MY CHILDREN ALSO LOVE IT!!!
Comment by Christie — Apr 19th 2010 @ 8:47 pm
@Michelle N.

Thank you for your kind words. I am so grateful to have found such a wonderful site, where as parents we can all go and tell our stories…..so that we can learn from each other. Dahlia
Comment by Dahlia — Apr 19th 2010 @ 11:59 pm
Hello,

I haven’t read all the comments yet but wanted to comment to Laura about her autism question.
Yes, we have totally noticed a regression with her behavior and social skills. She has became mildly combative and has also became defiant. But she also has a milk allergy so I am wondering if that is what is causing the problems. She had ODD until we took away all casein when she was 4 years old. She has been casein free for 5 years now.
With natural supplements and diet we were able to lessen her autistic symptoms but they have worsens with this med. She also has became more hyper.
She has improved on her school work and focus though and that is what we were unable to do naturally. We made massive improvements but just couldn’t get enough.
Comment by Dana — Apr 22nd 2010 @ 8:51 am
My 7 yo daughter takes 36 mg of Concerta and 2mg of Intuniv. The Intuniv is a new medication to her, having only been taking it for 1 week or so now. I have noticed however, that she falls asleep in class (around 3 p.m.) and wakes up around 1 a.m. each night. She currently takes her dose in the morning before school. I also give her Melatonin around 6 p.m. to help her sleep. Any thoughts on changing the Intuniv to an evening dose? Have any of you had similar experiences and switched it to an evening dose with a positive outcome? Looking for all the help I can get! Thanks!
Comment by Julie — Apr 22nd 2010 @ 10:56 am
@ Julie

My son also takes 36mg of Concerta in the morning and is on the 1mg of Intuniv (about to increase to 2mg after this prescription is almost done). I had read that it may cause sleepiness and waking during the night if given in the morning so when we started 3 weeks ago, I gave it to him at night. He gets it between 6-8pm and he sleeps thru the night with no trouble, wakes up in the morning refreshed and does not get sleepy during the day. I hope this helps…Laura P
Comment by Laura P — Apr 22nd 2010 @ 11:04 am
We give ours at 4:00 p.m because she gets very hyper for at least 3 hours after getting it. The afternoon tiredness seems to have gone away with the afternoon dose.

HTH
Comment by Dana — Apr 22nd 2010 @ 12:05 pm
Thank you Dana and Laura. Your thoughts have helped.
Comment by Julie — Apr 22nd 2010 @ 1:12 pm
ok we are on our 4th week of intuniv and we are going up to 3mg tonight.My daughter has been waking up more often during the night but that could be that she is now sleeping in her own bed instead of with me.I am going to try to give her melatonin tonight to see if that helps. Does anyone know what dose i should give an 8 year old?
Comment by christy — Apr 22nd 2010 @ 4:12 pm
My daughter is 7 1/2 yo and weighs about 55 pounds. I was told to give her up to 6 m.g. each night by her psychiatrist. She currently takes 5 m.g. at 6 p.m. and goes to bed at 8 p.m. She is usually out like a light within 10 minutes. Hope this helps!
Comment by Julie — Apr 22nd 2010 @ 4:41 pm
thanks julie! i will let you know how it works.
Comment by christy — Apr 22nd 2010 @ 7:53 pm
Wow… I just started reading from the top and am simply wowed. My daughter was diagnosed with bi-polar because of her ‘symptoms’ when she was 16. I had been dealing with her behaviors since I divorced her father in 2002. I always thought it was rebellion, because of the hurt she felt with our split. I was wrong. Once she was diagnosed, she was able to get help with medication through Childrens Hospital. It has been a rollercoaster of emotions and problems for 2 years. She has been on several different meds, different ‘experiments’ on doses, for too long. She would go off her meds at random claiming they didn’t work and didn’t know how to proceed with her. When she turned 18, I thought all hope was lost. She refused all medication and decided she would do whatever she wanted. It got to the point “psychokinesis” became a part of our household. I know a lot of people don’t believe in that stuff, but my daughter was not right in the head. When you start having objects flying around the room at random, with no explanation, you become a believer in many things. I believe my daughter was so deeply troubled, so depressed, that she triggered this in her brain. Again, I know what some people are probably thinking, but until it happens to you, you cannot imagine the possibilities or the extent of what a mental illness can do to a person. I finally had enough of her erratic behavior and had to do something. I gave her the option of a day treatment program or a full commitment. Granted, I already know how difficult it is to get someone committed, but she didn’t know that, nor need to know that. Thank god she decided to go into treatment! She has been there for about 2 weeks now and they did some more testing on her. My daughter may not be bi-polar at all. She tested a 99% for ADHD! Yeah, I know, extremely high! She was not getting treatment for ADHD, so this may have been the reason “nothing was working” for her. The psychiatrist she is seeing at her treatment facility has now put her on Intuniv. She has been on it for only a few days and yet she just told me this morning she feels so much calmer. I don’t know if it can work that fast, but I can see she has a better demeanor. I read some of the posts that talked about how medicating your child is harming them, not helping them, and I just feel disgusted. My life and my family has been turned upside down for the past 6 years or so, more severely in the past 3 years. Not to mention what this illness has done to my daughter. And this is an illness, this isn’t something they chose to be born with, nor is it something that we, as their parent, choose to give them. I have heard the criticism and seen the disapproval in the eyes of those around me, quietly blaming ME for how she is. I want to scream at them, tell them that if it was me, if I was such a bad parent, then my other two boys would have the same characteristics, the same behaviors as she does. Ahh, the rantings of a frustrated parent Well, since my daughter just started Intuniv, I had to find out as much about it as I could, giving my daughter that same information so she knows what to expect. I am so glad this blog exists and will be posting updates as I can. My daughter is 18, so apparently this medication is not just for children under 17. As for that guy who criticized the warning label about the “pregnant, not operating heavy machinery” – Girls get pregnant as early as 13 and 14, and kids start driving around the age of 16… If the target age group is 6-17, this warning label makes a lot of sense.
Comment by LeeAnne McDonough — Apr 24th 2010 @ 1:49 pm
LeeAnn: Has your daughter tried Abilify for her bipolar? I have bipolar and take 5 m.g. of Abilify at night along with 50 m.g. of Serzone for the depression aspect of the bipolar. It took me 10 years to get a proper diagnosis, but ever since being on the Abilify, I now know what it feels like to be “normal”. There is no generic for the Abilify, yet, but it is worth the cost! Also, having ADD as an adult adds to my many issues! I take 60 m.g. of Adderall everyday to combat that! Nothing like having to take a pill in the morning to get up and one at night to sleep! I feel like my life revolves around the drugs, but I am happy with life and pleasant to be around, so I guess it is worth it! Tell your daughter, she is not alone and if she never needs someone to chat with about how she is feeling, I would be more than happy to talk to her! Tell her good luck with the Intuniv! I hope it helps!
Comment by Julie — Apr 26th 2010 @ 8:50 am
@Julie: She was on Abilify on and off for about a year and half. She ranged from 5mg to 15mg depending on what else they prescribed with it, if anything. Sometimes that was the only thing she was taking. Her new psychiatrist doesn’t want to put her back on Adderoll as it’s a stimulant and would need an extreme amount to combat her ADHD. My daughter had a heart condition called Wolf Parkinson White syndrome. She had 2 surgeries to take care of that, but she now deals with SVT on occasion. The high dose may increase her episodes of SVT so they wanted to try the Intuniv first. She has been on it less than a week, but I have noticed a huge difference in her already! The impulsitivity is pretty much extinct (so far) and that was one of the worst symptoms she was dealing with. They are looking at possibly putting her on a second med called Topamax to help regulate her mood swings. They have only “talked” about it as of now, as they are waiting to see how she does on Intuniv first.
Comment by LeeAnne McDonough — Apr 26th 2010 @ 10:05 am
@LeeAnne: I have noticed that my daughter’s impuslivity has calmed down alot since she started taking the Intuniv as well. Maybe we have found our miracle drug!
Comment by Julie — Apr 26th 2010 @ 10:45 am
My son has been taking intuniv since January 2010. We started on 1mg and increased his dose mid March to 2mg. He was more sluggish, tired, sleepy, and this was not helping him pay attention in class. So at our last doctors appointment, the physician decided it would be best to try him on short acting dose of tenex which has the same ingrediant as intuniv. He ordered 0.5mg at 7:00 am and 0.5mg at 6:00pm. He plans to eventually change his pm dose to be given at noon during school so that he gets more benefit from it while he is there. I have seen a great improvement in his alert level. He is no longer yawning frequently throughout the day and he no longer has that glossy look in his eyes. He has been on this dose since April 23rd. He seems sharper and more appropriate when he has a conversation with me. I am pleased with this so far from what I seen at home. I still have to wait and see what his teachers have to say about how he is paying attention in class. Depending on there report the physician at that time will make adjustments to his dose.

Dahlia
Comment by Dahlia — Apr 27th 2010 @ 12:11 am
WOW!!!Why I haven’t found a site like this before, I do not know! My daughter was 10 when she was diagnosed with trichotillomania. In less than a month she had pulled all of her hair, which was half way down her back, out of her head. She was diagnosed with anxiety and began Prozac. She took that for a year, but she absolutely HATED it. She said it felt as if her head was in a cloud. At the end of that school ar, she was diagnosed with ADHD (just the non-attentive type) and OCD as well. She has tried Straterra and Vyvanse. Tomorrow we switch from Vyvanse to Concerta. She has recently began Clomipramine. After seeing the same child psych (who I’ve been told by many is the best in our area) for 3 years, he told us at our visit last August that we’d tried just about everything. I was stunned, my husband was convinced the drug companies had him in the palm of their hand (he had a sample for EVERY new med or dose he prescibed), and the pediatrician felt it was time to go with a more experienced doctor because my daughter had very little improvement with her trichotillomania and had lost 28 pounds over the course of a year. We began seeing a child psych at Vanderbilt University. We go every 6 weeks now because it is a 3 1/2 hour drive for us. We do have hope. Her dr at Vanderbilt is making many changes, right now we are adding Concerta, but she may add Intuniv at our next visit in June. She thinks it may help with my daughter’s urge to pull. I am willing to try anything at this point becuase my daughter is really suffering. She is such a great girl, and every adult she comes in contact with LOVES her and her witt. She does well in school, but she has few friends and never gets invited for sleepovers or parties. I know that kids her age cannot get past her short, short hair. Making it hard is her struggle with anxiety, ADD, and now depression. I hope we can get some of it under control at some point!!!

On another note… I am also a 4th grade teacher. Over the years I have had students that I recommend see their doctors for evaluation for ADD, but the parents problem with the stigma attached to medication has held them back from discussing it with the doctor. The child is truely the one who suffers! When a child is truely ADD (which is why a doctor, NOT the teacher can diagnose the problem) medication can drastically improve the child’s grades, behavior, and even peer relationships. As a parent, I have really had to tell myself that I am doing the best for my daughter by medicating her (and at times she has been on as much as 4 different meds). No parent wants to medicate their child if it isn’t needed! However, if a child were diabetic, I don’t know many parents who would withhold insulin! Having said that, as a teacher, I know it is my job to work through ADD issues with children when parents refuse to talk to their doctors too. It takes a great deal of energy and patience, but I have a couple of students every year who I am sure (although I cannot and wouldn’t try to diagnose) are ADD. I just have to try to work with those children in a way that will hopefully help them learn a little more and in a way that will not be too distracting for the rest of the class. We did put a Section 504 in place for my daughter in the 5th grade. That may help some of you if your kids don’t have IEPs. In our schools IEPs are reserved for children with learning disabilities, but my daughter doesn’t have any learning disabilities so we wrote her Section. I can’t remember everything we included, but I know we put in things like visiting the nurse or counselor when she felt overwhelmed, not having a timer count down on timed math facts tests (this was a huge help for her), getting longer to complete tests if needed (this even worked for our state mandated standardized test), being tested in a quiet room with few or no other students, and having help packing up at the end of the day. She didn’t end up needing most of those modifications, but they were in place just in case.

Thanks to all of you who have shared your experiences with medications. It has given me a lot to think about. I don’t remember who said they had to get over being sad about their child, but thank you… I think I will write that down so I don’t forget. I just need to focus on helping her today and accept she is not the same child she was just a few years ago!!!
Comment by Heather — May 1st 2010 @ 11:34 pm
Wow…I was doing some research because I was surprised to see an ad for Intuniv…I know the drug used in that is for lowering blood preasure (my dad took it) Anyway, my son is 9 years old, he had seizures when he was 4, took Topamax for that (he is actually on day one of weaning off) I didnt want him to take anti-seizure meds at first, but I knew I had to… he has also been diagnosed with “ADHD”… I am putting quotes around it because, SORRY…it’s just such a bogus, corporate, big-pharm diagnosis! So I am proud to say my son is “ADHD” medication free… I cut most sugars out of his diet, the only sugar he has is in the form of pasta or bread..no juices, no sodas…. he eats real food, meat, fish, chicken and veggies… I stay away from processed foods and keep it as organic as I can… and we manage… his teachers want him meds SO bad, but oh well, too bad! He will grow up and grow out of this…I had one dr tell me it would turn into a condect disorder and he would get in trouble with the law when he was older… what a crock! He is a good kid, comes from a good family… I highly doubt he will live a life of crime…. well… Im sure you will all attack me, but I dont care, I wont be checking here again…. and this doesnt go to the parents with the autistic kids or the ones that are extremely violent…. but to those of you with a kid like mine, he interupts, hes LOUD he talks tooo much, he has some problems making friends, whatever, all this wont matter, it will be ok….. just keep doping your kids up! Good going….. I scrolled down this page and just saw drug names and dosages over and over and my stomach hurts…. those poor kids…
Comment by Rita — May 3rd 2010 @ 12:57 am
Wow Rita!!! Judgmental much???? Are we playing the who’s shit smells better game?? Well I bet I can win. LOL. My dd has over 10 dx’s. Her ADHD is so severe that she is considered borderline M.R.. If she can stay focused than her I.Q tests jump up 20 points but that rarely happens. She is on a very restricted diet, very. It cost almost a thousand dollars a month just to buy her food alone. She has been seeing a natural doctor for over 5 years and is on lots of vitamins and supplements.
With the care of the natural doctor she went from being non verbal and severely autistic to being in a regular classroom with a para.
Our natural doctor agreed that we should try this product because we had gotten stuck with the natural route and we were hoping that the medicine would help her get over the mountain we seemed to get stuck on.
Rita maybe you should be less judgmental because not everyone just throws their children on medication. A lot of people like me has taken their children to count less doctors and educated themselves before making this decision. Some children need the help the medication offers to be able to be children.

That said here is my update one the medication. Once we increased the dose to 2 mg than we started getting a lot of problems. I don’t necessary think it was the intuniv but the dairy that is in it. My dd had severe odd before we removed dairy out of her diet. I think with the 2 mg pill being so much bigger that she was being exposed to just too much dairy. We might try the 1 mg again in a few weeks because it was helping her focus and she was finally able to focus long enough to learn.
Comment by Dana — May 3rd 2010 @ 8:07 am
I’ve been on the message board for a short time, but have so appreciated the overwhelming support and insight from other parents based on their own struggles and expiences. It always surprises me when someone who is not looking for help has to chime in and be so insulting and ignorant. Rita being our newest one.
I think its safe to say we’ve all tried diet, vitamins, supplements, exercise, neurofeedback, ect, ect but the one tried and true therapy for some is medication. I agree that in some cases the symptoms of ADHD may diminish as the kids get older, but maybe not. But more importantly, the damage my be done for those kids who were not supported by the their parents by seeing a qualified specialist to help their kids cope with there MEDICAL issue-ADHD/ADD and others.
These kids many times, not all will seek out ways to feel better that are not beneficial and then you will have a mess on your hands. Be honest with them, help them-they need us and count on us to be their advocate. Is this fun? No. Would I love to have a child that can cope and not feel ostercized? Yes. I have one who is very well adjusted, and self confident and I wish to God everyday that my other guy had 1/10th of his abilityt to go through life and not feel so ‘different’ as he puts it. On the other hand, my ‘well adjusted’ boy is the most empathetic and kind 9-y/o because he see’s the struggles his brother has to endure and is patient with others who have trouble making friends and not being able to control their behavior.
Rita, I hope your child grows out of this and turns out to be a happy adult-but ask any adult today who struggled when their were young and their memories of childhood are painful, especially when they realize what they had could have been addressed-if only they’d known then what we know now.
Thank you for not coming back-we don’t need your toxic ignorant additude, and either does your child.
Comment by Veronica — May 3rd 2010 @ 8:38 am
@ Rita
I’m sorry but have you not taken your child to a doctor that explained to you and showed you brain scans of people with ADD & ADHD? There are CRATERS in their brains in the area of task completion and focus – when asked to complete a task or required to focus, these craters get LARGER and it is virtually impossible for them to do what you ask. The medications fill in these craters and allow them to do normal every day tasks without a problem. If your child was diabetic, would you refuse insulin? If your child’s teachers are having troubles with your child in school, it is not only YOUR CHILD that you need to think about – the teacher has to take more time to redirect your child and therefore spending less time with the other kids in class teaching. That’s not fair! If your child truly has ADHD and nothing else has worked, you turn to medication! We don’t WANT to medicate our children but we’re trying to make it possible for our children to grow up with a happy childhood and be able to live productive adult lives. My sons’ impulsiveness was getting him into In School Suspension in 2nd grade – then he was diagnosed and medicated and he hasn’t seen that room since! He was being labeled as a troublemaker and a bad kid already because of his ADHD – is it fair to let him continue up thru high school with that kind of reputation when with a little medication he can be the kind, loving, thoughtful, caring and intelligent boy that he is? Will all kids with ADHD and ADD that goes unresolved turn into criminals or drug addicts? NO but just because you come from a good family doesn’t mean that won’t happen either! People that have chemical imbalance issues untreated or undiagosed tend to turn to drugs because they make them feel better or normal. People that have chemical imbalance issues untreated or undiagnosed can turn to crime because of their impulsiveness and inability to make proper decisions. Will this definitely happen? NO but why take the chance. Why let your child suffer (not to mention the teachers and other kids in class)? You can go ahead being misinformed and judgemental but we, on this blog, don’t want to hear it! If we didn’t care about our kids, we wouldn’t be researching the meds!
Comment by Laura P — May 3rd 2010 @ 12:19 pm
I come on this site to read about kids’ struggles and accomplishments, and to read about other parents’ experiences, and learn, and to feel like part of a group effort here. If you do not believe in medication, then you will not budge, and that is your choice. Leave us pro-medication parents alone. Go to another site where your criticism is welcomed, if there is one.
Comment by Christie — May 3rd 2010 @ 12:37 pm
I thought we were here to help each other help our kids, not criticize each other! If you don’t believe in the meds, get off of a blog that talks about them. Those of us who do believe and are thankful for the meds could really use our time better if we didn’t have to read all the anti-medicine propaganda!
Comment by Julie — May 3rd 2010 @ 1:00 pm
@ Rita,

Join another forum because we here all support one another and do not judge eachother for the individual choices we have made for our children. Thanks to all the parents who showed their support to me and my family during such difficult times. I will continue to share my support to all of you as well. You have all comforted me many a night when I was so low ….
Comment by Michelle — May 3rd 2010 @ 1:38 pm
Author: Shannon
One more general point. . .You can tell what incredible advocates we all are for our kids based on the comments regarding Rita’s thoughtless criticism. There is not only strength in numbers but there is a palpable sense of support in those numbers on this board. I remain grateful for everyone’s honest and realistic accounts of their lives so that we all may benefit from sharing our experiences.
Comment by Shannon — May 4th 2010 @ 10:13 am
My son has been on 3mg of Intuniv and 72mg of Concerta for a few weeks now. I tried to stop his night-time med that he takes for sleep for about a week, but he was up at all hours, so finally caved and started giving it to him again so that he could get a good night’s sleep. He was very grateful. He is not sleepy during the day like he was at first at differing times of the day with the 3mg Intuniv. He still has no appetite due to the Concerta. He still forgets to turn in homework, bring home papers, etc. The only real benefit I have noticed from the Intuniv is the morning/evening times are more relaxed when the Concerta is out of his system. I am not sure if, with this being the ONLY benefit, it is worth the extra med. Any thoughts? At least there is less “fighting” to get him ready for school and bed. It probably IS worth it.
Comment by Christie — May 4th 2010 @ 12:39 pm
@Christie

If a little peace and quiet for you as well as a less dramatic morning and evening for him aren’t benefit enough, I don’t know. My daughter has calmed down A LOT with the Intuniv. I have been advised by her doctor that after a while, it is possible that she could come off her Concerta completely and stay only on the Intuniv. That is the day I am striving for. Poor girl has lost 10 pounds in the last 3 months on the Concerta and at 7 1/2 feels she is too skinny. She weighs about 50-55 pounds now. I guess my constant battle with my weight and her seeing me on the scale does not help any! If knowing that your son has more peaceful mornings and nights helps you sleep at night, I say keep him on it.
Comment by Julie — May 4th 2010 @ 3:23 pm
@Julie, thanks! The doctor told me the same thing, that maybe he could come off the Concerta, but I seriously doubt that could happen. I am single mom, and his dad did not give him his meds on his morning last week, and I could really tell, I asked him if he took his meds, and found out he had not. He is 10 and weighs 59 pounds, he is really skinny, but also his dad and I are both thin and I was very thin as a child, so I know that plays a part. He is only self conscious about it when it comes time for summer camp and having to change into bathing suit in front of all the other boys. Come to think of it, he often sits out the swimming time… hmmm I wonder if it’s for that reason???

I would think your daughter’s weight loss will eventually stop, but 10 pounds in 3 months does seem like a lot!
Comment by Christie — May 5th 2010 @ 10:03 am
@Christie: My daughter’s father only gives her the Intuniv on the weekends (that is when he has her). He says that she eats more when she doesn’t take the Concerta. I am too afraid for her teacher and classmantes to take her off the Concerta during the week! Maybe the day will come, but for now, Concerta and Intuniv it is. We have an appointment this coming Monday with her psychiatrist, so we will discuss it further then. But daddy says she acts fine when she is with him and does not take the Concerta. Daddy has been known to sweep her temper tantrums and outburst under the rug a time or two in the past though, so I have to see this for myself before I believe it! After all, she is “Daddy’s little girl” — Good Luck!
Comment by Julie — May 5th 2010 @ 12:03 pm
Same here! Dad only gives him 1/2 the Concerta, says he does fine, but the stories I hear involve my son being very mean to his little sister while they are there, and dad yelling at them a LOT. It is my opinion that if he were on right Concerta dosage over there, that things would go much more smoothly for the kids.
Comment by Christie — May 7th 2010 @ 6:50 am
Well, we went to the doctor this morning and he increased my daughters Concerta from 36 to 54 mg. He also increased her Intuniv from 2 to 3 mg. He advised me to start giving her the Intuniv at night to see if it helps with her “outbursts” at school in the early morning. She is usually good after the Intuniv kicks in, so we will see if giving it to her at night helps the early morning issues as well as the waking up at night issues.
Comment by Julie — May 10th 2010 @ 1:21 pm
That seems strange to increase 2 meds at the same time. Our doctor said to only change one thing at a time for at least a few days first, preferably a week. Then you know what med is improving what symptoms. I would check with the doc on that.

On another note, since he has been taking 3mg of Intuniv, I have noticed in the past week that his tics are BACK. He rolls his eyes, blinks alot more – like longer stronger blinks before rolls his eyes back. He does not notice this when I ask him why he is doing it.

He also seems more hyper in the morning again, like before starting Intuniv period.

He is also way more anxious, about snakes/spiders/bad guys breaking in. I looked back at his records, and the end of April last year was when his anxiety skyrocketed. We increased the anxiety meds, and it went down in the fall. I think it is because the creepy crawly season is upon us. I don’t know if he needs his anxiety med changed, or just to take him to a snake class. We saw a 5-foot black snake in our driveway last week. That was just the icing on the cake!!!!!!!!! I have appt on the 26th, but this is the last appt with this doctor, as he is leaving the practice. I don’t know who we will see after this. Oh, the drama!
Comment by Christie — May 10th 2010 @ 3:38 pm
Melatonin is essential! My son’s sleeping issues are gone thanks to it! Finding the right amount can take some time…my son is taking 12mg a night b/c he metabolizes it so fast. My daughter and I each only take 3mg. I would recommend starting with 2 or 3mg, then upping it in reasonable increments until you find the dosage where your child gets sleepy, falls asleep, and stays asleep. I recommended melatonin recently to my neighbor who’s 2 yr old son was just diagnosed with autism and stays up most of the night, getting only a few hours of sleep a night, and won’t take a nap during the day until he’s over-stimulated and over-exhausted. She started him on just 1mg a night b/c he’s only 2, and the first night he slept 9 hours! She is LOVING it! Everybody get a bottle of melatonin!
Comment by Jennifer — May 10th 2010 @ 5:43 pm
My cousin also uses this for her son, who has problems which have not been figured out yet. He has been “labeled” several things and they keep changing their minds. She recommended it to me, and I tried it but it didn’t really work for my son, although I do believe it works for some children. He is on a RX sleep med that works great, but then again, that is an additional drug, not a natural supplement as melatonin is.
Comment by Christie — May 10th 2010 @ 7:45 pm
I did notice that my daughter was very lethargic this morning. She didn’t want to get up, she slept on the way to school and her eyes are very heavy right now at school. I gave her the higher dose of Intuniv last night at 7. Maybe I need to give it to her ealrier, say around 5. I’ll try that tonight. I think I may need to cut out the Melatonin all together now that she is taking the Intuniv at night. I have already decided that if she doesn’t improve (and wake up) in the next couple of days, I am going to put her back on the lower dose of Intuniv and just tell the doctor the 3 mg was too much for her little body. Thanks everyone for your thoughts on the situation.
Comment by Julie — May 11th 2010 @ 8:47 am
My son was more sleepy when he first started the 3mg, but after 3 or 4 or 5 days, was fine. I gave to him at night at first, then changed to the morning because I heard that it is strongest after 10 hours. He has not had any problems with being sleepy at school anymore. Give it a few days, I also almost went back to 2mg, but he adjusted just fine, like I said, after several days. I tried to stop the sleep med, but wound up needing it anyway after too many sleepless nights and waking in the middle of the night. Good luck.
Comment by Christie — May 11th 2010 @ 9:14 am
@julie – I agree with christie… give it more time. My daughter went to 3mg and was very sleepy too for the first couple days… she has since gotten over the lethargy and is now doing great… She takes it around 7pm and has adjusted well.
Comment by LeeAnne M — May 11th 2010 @ 2:03 pm
I have a gifted 7 yr. old who just started taking Intuniv 6 days ago. He has been lethargic since day 1. I give it at 7 in the evening. I’m ready to stop it altogether already after reading most of your comments. He is disruptive at school (so his teachers say) He is not at home. He is impulsive and rude at times. He’s a perfectionist. His grades are great and he was bumped up a grade. I think he is just less mature than his classmates. I don’t believe in my heart he even has a disorder. Any ideas?
Comment by Susie — May 12th 2010 @ 1:00 pm
Wow! I don’t blame you for questioning this, but then again, there aren’t many details. Has he been labeled ADHD by the teachers, just because he is disruptive?
Comment by Christie — May 12th 2010 @ 1:40 pm
Maybe his disruptive behavior is his frustration. Sometimes these kids are so smart, that they get frustrated having to deal with people who are “slowing them down” or don’t understand them. My little one is ADHD, but he’s also a perfectionist. He gets extremely frustrated when he’s trying to do something his way and people don’t understand or are forcing him to do it their way. Not many ADHD kids get moved ahead (although they are VERY smart). They usually struggle too much in their classroom environment. Just my opinion
Comment by Renee — May 12th 2010 @ 3:28 pm
Susie,

My son is 10 years old and he was diagnosed with aspergers disorder which is a high functioning autistic child. He learned to read at the age of 3 and peseverated on the solar system, space, aviation, and weather phenomena. Well I could go on but, my son has difficulty with socializing and focusing. We had a complete nueropsychological battery done when he was in kindergarten and second grade and we are curretly in the process of having another round of testing done to see how much improvements were made with his therapies and medical treatments. We have to continue to do this to prove to the school the need for addtional services for him. They do not want to label him as AU (autism). I am not saying your child has autism but you must remember that autism is an umbrella that includes multiple diagnosis one of which is adhd. My son is on fluoxetine for anxiety disorder and tenex to help with adhd. We have tried intuniv but it was too strong and he was very lethargic. Tenex has the same ingrediant as intuniv it is the shorter acting form of it. (very old drug) Hope this helps. Dahlia
Comment by Dahlia — May 12th 2010 @ 3:48 pm
My son is 11, has been on Adderall XR of increasing dosage for over a year. While it helped him, he there were problems falling asleep at night (Melatonin may have helped a bit but not enough). There is also concern by the Dr that he’s not gaining weight, but he never ate much before Adderal anyway.

Lately he’s been having more anger, more disruptive behavior. This plus Dr’s concern about other issues, caused Dr to suggestion Intuniv. At first he took generic short acting Guanfacine (same thing) due to insurance coverage for short acting but not long acting Intuniv. We went from 1mg per eve, which seemed to help, but then 1mg during the day (1/2 in morn, 1/2 in afternoon, full 1mg in eve). At that point, the exhaustion was unbearable, and he started having terrible emotial outbursts, crying over the simplest tasks. We took him off this for a couple weeks, just Adderall XR through this all, with and without Guanfacine. Now Intuniv is covered by insurance and we decided to try again. Low dosage of 1m in eve put him to sleep like a brick last night, 3rd night on the med. Next morning he could barely get up, barely play his favorite activty, baseball. This on just 1mg.
So had best night ever in terms of getting to sleep,
but no ability to get up and function next day.

So planning to discuss with doctor using the short acting one again, just in the evening after Adderal starts to wear off, hoping it wont knock him out the next day, and he can be awake. Also may try Melatonin earlier in the eve to get him to wind down. Will post back what happens.

Also going to try therapy for OCD, as I think OCD is the main problem with his weight (too picky about food) and his sleep (just have everything just right to fall asleep, sheets in order, right pajamas etc). If that works, maybe the Adderall XR alone will do the trick.
Comment by Barry — May 15th 2010 @ 5:38 pm
For all of you who told me to give my daughter some time, thanks. It has helped. I give her the Intuniv at night (6 p.m.) and she is great! Sleeps like a rock, gets up fine and no longer sleeps in class! We love it! Looks like I she is getting back to being her “normal” seven year old self again! (Before the symptoms and being diagnosed with ADHD) Thanks for your support!
Comment by Julie — May 17th 2010 @ 12:58 pm
My daughter is on her second month of intuniv.It has helped keep her from being so hyper and her school work has improved. Her spontaneous anger outbursts have improved and her fits are way better. However, I now think she has OCD and and trying to learn how to deal with that. At first I thought it was just attitude that she was always saying the last work or her being befiant as to not being quiet and now i am learning it may not be her fault. Am i the only one who has went through this? Also i forgot her intuniv one night because she had a virus and she threw up so much that night i didnt know if it was the virus or because i forgot her intuniv..anybody want to ease my mind and say they forgot the intuniv and their child was fine?
Comment by christy — May 17th 2010 @ 4:52 pm
I don’t know if I can help, but could probably cast doubt on this drug. My son has been on Intuniv 3 for a few weeks, and week before last, he came home from his dad’s Monday complaining of headaches. He had forgotten to take his Intuniv or Concerta or anxiety med, or maybe he didn’t forget, nobody seems to know what happened to his meds since his dad left them on the table for him to take. He kept changing his story about what and if he took any that day, once I confronted his dad. He can’t seem to tell anyone if and what he took. Then Wed and Thur he was out of school because he had vomiting and diarrhea. Coincidence? Stomach bug going around?

Last Saturday week ago, he complained of stabbing pain in his stomach and had to lie down for an hour. Last week, he complained of headaches again. I lowered his dose to 2mg Thurs and Fri because I am wondering if it is the Intuniv. The school called me on Thursday with my son in the office complaining of the same stabbing stomach pain. I picked him up, and he lied down and “read” his book for an hour. I told him he was supposed to have his friend over that day, but if he was sick, he could not. He miraculously healed and eagerly went back to school so he could have his friend over. I don’t know what is real, and what is made up, and what to believe, he has been known to fake, but I hate to think that if something is really wrong.

He went to dad’s again this weekend, back on the 3mg, (I guess), and today he said he had headaches all weekend and also today. This afternoon he was lying down with headache, and about an hour ago, threw up. He seems fine now. I am seriously thinking of taking him off of this, or at least cutting back to 2mg or 1mg, and don’t see any results in school I was hoping for. He has always been high on the scale for having body aches and pains above and beyond the normal kid. I am just concerned if this is too much med, or if he is just going through so much school struggles, AND me and his dad having just been to court Wednesday over custody (which his dad told him about, I would never), etc. Tons of adult information put into a child’s head, he already has an anxiety disorder, why he needs to be told more worrying knowledge is ridiculous. Sorry, enough about our story, I will let you know what happens with the meds, we have an appt with neurologist again next Wednesday.
Comment by Christie — May 17th 2010 @ 8:41 pm
Wow,so much information at once. My son is 11 years old and has autism. He is currently taking Clonidine and Risperdal. We had tried him on a stimulant ADD medication and he went absolutely bonkers. He was on Nortryptiline and it caused mood swings. I had asked his psychiatrist about a non stimulant ADD med and he said it was in the same class as the Nortryptiline and could cause the severe mood swings as well and he didn’t recommend it.
Now, I’ve heard about Intuniv. His next next med check isn’t until the beginning of July. I’m contemplating if this might work for him and if I want to try it. I dislike trying new meds but I want what’s best for him and he has struggled with concentrating in school from day one, but with his reactions to the ADD meds, it’s been a struggle. Thanks for letting me just read your thoughts. I feel like so many of you. It’s nice to have support.
Comment by Lori — May 17th 2010 @ 10:34 pm
@Christy
Christy: I forgot Intuniv one night and my son was fine. Since it is long acting, I don’t think that it is dangerous if they don’t get it one day. My doc just said to not stop it right away and if we’re taking him off it, we would have to wean him off. Hope that helps! I know that for my son, it has resolved his facial tic to the point that now I only see it at bedtime when he’s tired. I couldn’t be more relieved. I don’t see it helping with his impulsivity much but we just switched up to 2 mg 2 weeks ago so…He’s also on 36mg of concerta. I’m not too sure if that’s the right med for him and between the two of these meds, I’m going broke. Has anyone else used adderall with intuniv? I’m thinking of talking to the doc about changing…
Comment by Laura P — May 18th 2010 @ 10:08 am
@Christy: My daughter also missed a night dose and she was fine. Most likely a bug she picked up.
@Laura: My daughter is also taking Topomax, 50mg. Between the two, after insurance, my co-pay is $70. Topomax is pretty inexpensive-right along the same cost as adderall. She has been diagnosed with bipolar, ADHD, and is OCD. From that, you can pretty much figure what her symptoms were. She isn’t impulsive, doesn’t have the angry outbursts, has motivation to actually “live”, and is doing great in school. She gets tired every now and then in the afternoon, but takes a short 1-2 hour nap when that happens and is good the rest of the night.
Comment by LeeAnne — May 19th 2010 @ 7:48 am
@LeeAnne
My son is just ADHD and I don’t know that Topamax would be right for him. My problem is that my insurance stinks for prescription coverage. If it is a brand name, I pay 50% of the cost of the meds so Intuniv is costing me almost $125 and the Concerta is about $75. I’m trying to get some info on generic ADHD meds if anyone knows anything similar to Concerta or Focalin that is generic I’d appreciate the info!
Comment by Laura P — May 19th 2010 @ 10:51 am
Julie,
How much Intuniv ? My son was sleepwalking next day after only 1mg, and he’s 11. I’m glad to hear it eventually works better, but I had to take him off it, maybe can try again in the summer after school. He just can’t function at all even on the lowest dosage.

LeeAnne.
Ritalin is Concerta, and there are lots of generics but not necessarily going to work the same way in terms of spreading the dosage throughout the day. Ask your doc about Ritalin LA.
Comment by Barry — May 19th 2010 @ 9:22 pm
Laura P,
My son was on Adderal for a long while, and we tried adding Intuniv. Intuniv made him very sleepy, to the point I’d say he was sleepwalking, on a slow dosage. If you try it, need to do when you have 2+ weeks your child can be very sleep, so they have time to get used to it (summer break maybe).
Adderal worked well but on higher dosages it can make your child irritable and exaggerate things like OCD.
So we lowered it again, and may try Ritalin/Concerta as an alternative. Each child is different, just have to try different dosages/drugs until you see what works.
I am not finding Intuniv nor Adderal to be perfect but many doctors say they are helpful to other patients.
Comment by Barry — May 19th 2010 @ 9:26 pm
thanks guys she is still on intuniv 3mg and no more headaches or throwing up so she is good..but her attitude is another thing:( she defies me and talks back and ugh it is great one day and horrible the next. I feel like the worst parent in the world for disciplining my child but at the same time i know i am doing the right thing..i hope i am anyway.I have tried timeouts and reward systems and everything does anyone else have any ideas that work well with children with ADHD?
Comment by christy — May 19th 2010 @ 10:02 pm
@Christy: Again, I have to say Topomax has really leveled out my daughters mood swings and defiance issues. It is just an added boost to the Intuniv. She no longers tells ME what SHE is going to do, she doesn’t say NO when I ask her to do something, she picks up after herself and even cleans the house a few times a week – without me asking. Those are the only 2 drugs she is on and together they balance her out.
Comment by LeeAnne McDonough — May 20th 2010 @ 9:26 am
@ Barry, She is on 3mg of Intuniv now and 54 mg of Concerta. New Child! I love her more today than the day she was born. I finally have control over her and she finally has control over her emotions and outbursts! Loving it!
Comment by Julie — May 20th 2010 @ 10:48 am
@Barry
Thank you for your input. I’m going to talk to his doctor to see. Last night my son had a chorus concert and throughout the entire performance his face was twitching. I don’t know if it was because he was excited or nervous or tired but it was worse than I’ve seen it since we started the Intuniv. We’re on 2mg of that with 36mg of Concerta. I don’t think normal families realize how hard it is to evaluate the medications our kids are taking when we are not with them all day every day! How horrible that we have to rely on the opinion of others (i.e. teachers, after school care workers, kung fu coaches, etc…) to properly dose our kids? It’s so frustrating. And on top of that the cost! I’m a single parent, widow at 36, and the cost is killing me financially. Even more horrible that we have to consider what medications are working best for our children based on their cost. I’m thinking of switching to generic ADHD meds and trying the generic of Intuniv just so I can get ahead a little bit. I’m so frustrated and worried about my son…it would be so much easier if I had a spouse to share this responsibility with…I mean, what if I make a mistake? I already feel like I did make one by giving him Vyvanse and now he has a horrible facial tic – like a child with ADHD needs something ELSE for other kids to tease or give the other kids another reason to not want to be my son’s friend. It just breaks my heart….thanks for letting me vent here…
Comment by Laura P — May 20th 2010 @ 12:38 pm
Hello All,

I have an 8 yearl old son that was diagosed with ADD last year. We have tried Focalin, Concerta, and Adderall. The Adderall worked for awhile for attention and school, but he becomes anxious, depressed and argumentive. The psych upped his dose to 15 mg., and then he couldn’t sleep, even with Melatonin. I probably did not give it long enough – one week. We just started him on Intuniv three days ago. The first day was fine, but the past two days he becomes groggy and falls asleep for about an hour in the early evening. He starts summer camp tomorrow and I can’t send him to camp falling asleep. From reading everyone elses posts it seems the majority of us are having the same issues with Intuniv. I, like many of you hate trying drug after drug on my child, and watching as terrible side effects take hold. I don’t plan on continuing with Intuniv.
Comment by Kim — May 31st 2010 @ 7:21 pm
@Kim
I wouldn’t give up on the Intuniv quite yet. Give him his dose at night. Is he taking anything else or just the Intuniv? I started out giving my son his Intuniv at around 6 or 7 at night and he takes Concerta 36mg in the morning. I’ve not had ANY issues with him being sleepy. Now, because of the cost I switched him tonite to the generic, Guanfacine, which I’ll give him 1 mg in the am with this Concerta and 1mg at night. When school is over he’ll take 1 mg mid day as well. I just don’t feel like dealing with the school nurse for a week and a half of school. I’ve been happy with the affects of the Intuniv for him. His impulsivity is much better and his tic is only present when he is nervous, excited or tired. As my neurologist said, it will take up to 3 -4 weeks to see the affects of the Intuniv. So, give it to your son at night and see what happens is MY advice! Good luck!
Comment by Laura P — May 31st 2010 @ 7:58 pm
Hi Laura,

Thanks for the input. I had considered giving it to him at night – say 6:00 and see how that goes. It makes sense as he seems to crash about 6 – 7 hours after he takes it. I will try that tomorrow night. I have such a hard time waiting the medication out, and letting him go through the side effects. He just woke up about an hour ago and also complained of his stomach hurting but that seems to have subsided. His appetite has improved considerably and I don’t think he is as argumentative. Since it is a holiday weekend it is hard to tell how well it helps him focus. He had open heart surgery when he was 13 months so I am a paranoid, overprotective mom I am afraid, even though his condition was fixed. Thanks again for the input and well wishes!
Comment by Kim — May 31st 2010 @ 9:10 pm
@Kim

Let us know how it goes giving it to him at night. I understand the overprotectiveness – all of us on here do – we don’t like to have to give this stuff to our kids but we really don’t have a choice right? Like I said, my neurologist said it can take 3-4 weeks to see any affects it will have on his focus or impulsivity so don’t give up too soon. It is SO hard to wait and not seeing them all day while they are at school makes the decision making that much harder as we have to rely on the input from the teachers to make medication decisions for our children. But, what else can we do really….good luck and keep with it…it might just turn out to be the miracle you’ve been looking for (as we are all looking for)!
Comment by Laura P — Jun 1st 2010 @ 1:27 pm
@Kim: If you read back over my comments, you’ll see that I came here to see if having my daughter take her Intuniv at night would change things for her — and it did. She gets her Concerta in the a.m. and her Intuniv at 6 p.m. She sleeps all night, has great days at school and is an overall wonderful person to interact with again. Be patient, these are our children we are talking about and I know that all of us want what is best for them. As an ADD/Bipolar mom, I know what it is like to base your day around taking medication. I have a pill to get me out of bed and I have one to get me back to sleep. I have come to terms with the fact that this is just the way it has to be if I want to function properly. Our kids will get the hang of it too. PATIENCE. Intuniv will work!
Comment by Julie — Jun 2nd 2010 @ 8:38 am
I am so frustrated with my son’s behavior right now. He is happy, polite, loving, caring one moment and then the next he is picking fights with anyone and everyone in the house and his mouth gets so bad and he talks crap to anyone he doesn’t care who they are. He was currently on Lexapro, Risperdol and Intuniv. He was falling asleep at school, so we started taking him off the Risperdol, due to researching this drug more it can cause kids to accquire so much more issues they don’t need. So he is now off of everything but Intuniv and he still is having this issues like I said above. I just want my son back. He is so angry it seems most of the time and just mean. When he first started taking Intuniv with all the other meds he was good but he was like a zombie. I just wish there was an easy answer for him, because it breaks my heart seeing him go thru this and causes so much stress in the house with his siblings and step siblings.
Comment by Kristie — Jun 8th 2010 @ 1:01 pm
@Kristie – How old is your son? This may not be what you want to hear, but have you ever considered he may be Bi-Polar and not ADHD? The symptoms of ADHD mimic the Bi-Polar symptoms. Most health care professionals re reluctant to admit that a child is Bi-Polar and thus, refuse to diagnose it. I ask because I am an adult who has Bi-Polar and ADD. I am a rapid cycling Bi-Polar and I would get mad at the drop of a dime before I was put on Abilify. The way you describe your son, it sounds just like me before I was diagnosed. I could be at work, working on a project and the phone would ring and set me off. I have made my own secretary cry before thinking she did something to me to set me off. I am not proud of that fact, but it is the sad truth. Now, I am cool as a cucumber and nothing really gets me mad anymore. Look up Bi-Polar and see if your son does not fit the criteria. There is a website, not sure of exactly what it is, but Google Julie Fast and Bi-Polar. She is an excelent, excelent source of information. She is struggling with Bi-Polar her self and has a blog and books she has written about it. Good Luck with your son!
Comment by Julie — Jun 9th 2010 @ 8:30 am
Julie- My son is 8. He has been diagnosed with a mood disorder. You are correct they will not say he is bi-polar and when you mention that most doctors give you this look like are you crazy. His father and myself had development testing done on him and he has a super high IQ. They do not believe he is ADHD, but his psychologist believes that he is and doesn’t feel he is bi-polar. We have been to several different doctors and they all have a different idea of what he is. It is almost like they just see him as a case and not a person. We are in the process of changing doctors for med management. I do believe that he does need help to manage his anger and out bursts. He did take Abilify at one point and I think it worked a little but he was on other stuff at the same time so it’s hard to figure out what is helping and what is hurting when they have him on so many different things. Right now he is just on Intuniv. Thank you for the info and I will research it.
Comment by Kristie — Jun 9th 2010 @ 2:00 pm
hi there. my 5 year old boy has adhd and takes intuniv only for it.. he is doing great on it at school (academically, socially, behaviorally etc) we started it at 6pm at night (he takes it along w clonodine and melantonin). we have been having issues around 4pm the following day when it wears off and impusivity is high and he is tired. he is not really physically agressive anymore but can be verbally impulsive (one min sweet as pie, the next with a sharp tongue and or comment that would make your head spin). we have tried lots of behavior mod stuff which works here and there. our doc just suggested that we give intuniv in am (and keep clono at night for sleep) to help with the rough afternoons. for those who are on intuniv only for adhd, what time are you taking it? we are overall thrilled w the med but the pms have been so rough, to say the least. any insight would be much appreciated. so happy to have found this blog spot!
Comment by amy — Jun 19th 2010 @ 6:35 am
Hi. My 11-year-old daughter started on Intuniv about three weeks ago. Although fatigue was severe the first couple of days and every time her dose was increased, she seemed to adjust. However, now that she is at 3 mg, she wakes after sleeping for about 4 hours and has difficulty getting back to sleep.
She was taking Focalin for her ADHD, but stopped once the Intuniv was on board. However, if she can’t get the sleep regulated again, we won’t be able to continue with the Intuniv even though we’ve seen benefits, especially in the evening. Anything anyone knows about helping with the sleep issue, I would appreciate.
Comment by JaLynn — Jun 26th 2010 @ 12:43 am
Hi Everyone! Thanks for all of the information and the personal stories. This is truly an emotional journey for both the parents and the child. It is a fact that not all drugs work the same on all persons and sometimes it does feel as though we are experimenting on our children and to a some extent we are. But this is a necessary evil unfortunately. I too have been at my wits end and rode the same emotional rollercoaster that most of you have been on, but I am finally seeing a light at the end of the tunnel.

My son is an extremely intelligent 8 years old that is normally the most loving and caring child a parent could ask for. He was diagnosed with ADHD towards the end of his first grade year after numerous calls and conferences with his teacher because he could not stay in his seat and do his work without getting up and disturbing other children. He was able to grasp the concepts of various class subjects but was not able to focus enough to do it on his own. He would end up bringing three hours worth of homework home with him almost every night because he did not complete it in class. While doing his homework he would constantly fidget with everything from his pencil to basically anything he could get his hands on. All the while rocking and repositioning himself on the chair. This was irritating until I realized that it was involuntary. He just couldn’t help it. He was constantly in trouble at school. His classmate started making fun of him and his self-esteem plummeted. He had so many people ask him why he behaved the way that he did and “what was wrong with him” that he started to believe that he wasn’t good enough or smart enough. He would cry every morning because he didn’t want to go to school and get in trouble or have the kids laugh at him. This broke my heart and I knew that I had to do something to fix the problem.

I always made sure that he went to sleep before 9 pm to ensure that he was rested for school, but he did have nights that he would sleep walk and end up in the front room trying to get out the door. After leading him back to bed and tucking him in he would go back to sleep and not remember the whole episode. He had been doing that since he was a toddler and before that as a baby he would wake up with night terrors that no one could explain or make better. I made changes to his diet to cut out the processed foods and sugary drinks and tried all of the “natural remedies” that I could get my hands on with no change to his behavior. Frustrated, I quit my job and decided to homeschool my son. After a couple of months of homeschooling and after a lot of research, we reluctantly, started him on Vyvanse about 8 months ago. We started out with a low dose and his attentiveness improved but he was extremely emotional and would start crying at the drop of a hat. He just wasn’t himself. His doctor said that it was common and that it meant his dose needed to be increased so we did. Again, great attention span; however, he just wasn’t coping and having mood swings. Again his doctor recommended increasing his dose as other similar children had success with an increased dose. At 50 mg his appetite decreased to the point that he lost almost 10 lbs he would get irritable, and then the horrific meltdowns started whenever he was asked to do anything he didn’t want to do. Well, as you can imagine we took him off of the Vyvanse. His doctor recommended Intuniv and here we are. What an improvement! He is able to focus and do his work, he eats like a horse and has put the weight back on, and his overall demeanor is much better. He is back to being confident and caring. He is at 3 mg and does get sleepy around 5 pm. You do have to make sure that they drink and adequate amount of water though. If this is not monitored it means the difference between being mellowed out tired and passed out tired. The one downfall is that he has been waking in the middle of the night around 3 or 4 am. I appreciate all of the input and I think that I will change from giving him the medication in the morning to the afternoon and see how that works. I will post again to let you know how that goes.

Again, I can not thank you enough for opening up and sharing your personal stories. It is so helpful to know that you are not alone and there are answers, we just have to find the right combination. Please do not let the ignorant rants and raves from uneducated people derail you and make you feel bad. It is truly sad that these people would even dare to come into a discussion with parents that only have the best interest of their children in mind. Those people were obviously never taught that you should walk a mile in a persons shoes before passing judgment. You know your children better than anyone else. I know that medication was not my first course of action and I am confident that I am doing the right thing for my child as you are for your children. Good luck to you all!
Comment by Lisa — Jul 7th 2010 @ 7:25 pm
Can I just say, THANK YOU, for everyone’s comments. It is so reassuring to read what other people are going through with meds. My son is 7 and now has been diagnosed with Tourette’s as well as ADHD. Talk about a hard combination. Everything that helps with the extreme ADHD makes the TICs worse – meds that help with the TICs, don’t do anything for the ADHD. I am at my wits end and wonder every day why my son has to go through this. He is such a sweet, sensitive, wonderful boy when we can get past everything else. I also do not appreciate the negative comments posted on medicating our kids. Believe me, I don’t want to medicate my little boy – we have tried everything else imaginable. I medicate my son so he CAN be a KID. Without medication, I worry his quality of life would be nothing. We have tried natural remedies on-line and from every health store with absolutely no results. By the way, natural remedies can have just as many side effects and are not regulated. Please let us talk with other people who understand what it is like going through all of this. Unless you yourself have any of these disorders or have a child that does – there is no way you can ever understand what it’s like.
Comment by Heidi — Jul 12th 2010 @ 11:14 pm
@Heidi – What med is your son on for ADHD? My son (at the time he was a bout 7 or 8 – now he is 13) was on like 30 mg of Adderall at one point and his tics were unbearable. He too was diagnosed by a neurologist with Tourettes. We cut his dose back to a level that simply kept him focused at school and the tics went away. He currently takes 15 mg of regular Adderall, not the XR. Changing him to the shorter lasting dose and smaller dose made the tics disappear. He woud bite his nails til his fingers bled and he would blink his eyes real hard like something was in them constantly. (About 10 times a minite) Everytime I try to increase him to 20 mg, the tics return so we have learned how to deal with his behavior at home and just give him enough Adderall to get through the school day. Maybe this information could help your son. Just know, Adderall causes the tics!!!! Doctors are famous for wanting to increase our kids meds everytine we say they have a behavior problem, so be careful what you say to the doctor when you go.
Comment by Julie — Jul 13th 2010 @ 12:32 pm
Julie– Jacob has been on Vyvanse, Focalin XR, Daytrana patch, and Metadate CD. His TICs didn’t start until about a year ago when he was on the patch. They have gotten progressively worse so we took him off of stimulants almost immediately. His TICs got a little better, but they are still there – even when he’s not on meds. He now has vocal TICs and I’m starting to notice a little bit of saying inappropriate things. He has been diagnosed with full blown Tourettes. It comes and goes, but remains fairly steady. His doctor put him on Risperidone last July and it worked fantastically for about 9 months. It even helped with his ADHD at first. Then it just stopped working and the TICs returned even more. Everytime we try to put him back on the smallest dose of a stimulant, his TICs get out of control. We are trying Focalin XR right now at the lowest dose, but if it doesn’t work, we may try the Intuniv patch. I think we just need to get the right combination, but what’s hard is once you find it, it can change after several months. I hope he grows out of the TICs a little bit because when he’s on a low dose of a stimulant, his behavior is fantastic. We just can’t handle watching his TICs get so bad when he’s on it. Have you ever tried Intuniv or Tenex with your son? I heard that it can help with the TICs and focus a little bit, but i know the side effects can be drowsiness during the day and sleeplessness at night. Thanks for your advice.
Comment by Heidi — Jul 13th 2010 @ 5:33 pm
@Heidi:
My son is 9 and has ADHD. He has been on Focalin XR, Vyvanse and now Methylin ER. When he was taking the Focalin, it worked great but he was on a HUGE dosage and when I switched doctors, she didn’t want to prescribe that high a dose so we switched to Vyvanse. Then he developed the facial tic which scared the crap out of me! I took him to a neurologist and he said many kids with ADHD will develop a facial tic between the ages of 8 and 10 and it will resolve itself by 10 usually unless it is truly Tourette’s. I’m sorry to hear that Jacob has been diagnosed with Tourette’s. My son is now on the Methylin ER (40mg) and he takes 1 mg, 3 times a day of the generic of Intuniv, Guanfacine. His tics are almost completely resolved unless he is really tired or excited or nervous. I preferred giving him the 3mg of Intuniv in the evening but I just couldn’t afford the med so I switched to the generic. He seems to be doing okay as long as he’s active. If he’s just sitting around, he does get drowsy. I’m going to start in August to cut back on the mid day dose so that he doesn’t have to deal with it at school in case he is getting drowsy. But when he takes the one in the morning with his Methylin ER, he’s fine (the stimulant counteracts the drowsiness). As we all find, it is a hit or miss with each combination we give our children. When you find the right one, you can be relieved until their bodies go changing and growing and you find you need to readjust or change the med altogether. It is truly frustrating but I live for those times in between where he is just a boy – living life like every other boy! THAT is why I pursue the right combination. Right now we seem to be on track but who knows what 6 months from now will bring. As he gets older, it will be easier as he will be able to actually verbalize how the meds make him feel and if he thinks they are working properly instead of what I get now which is, I feel ok or I guess it’s helping or I don’t know…gotta love it right? Kind of takes you back to their infancy where they couldn’t tell you what was wrong when they were crying and you just had to figure it out and try everything you could till you found the trigger! Good luck to you!
Comment by Laura P — Jul 13th 2010 @ 5:49 pm
Has anyone had a child on Topamax for ADHD or Tourette’s? I’ve read some interesting things on it and just wondering if anyone has had a good or bad experience with it?
Comment by Heidi — Jul 14th 2010 @ 5:50 pm
I just wanted to see if anyone could give some advice on what we are going through. My 5 1/2 year old son has been on Intuniv since approx. May 01, 2010. We started him on 1mg for about a week and tried to move him to 2mg but it made him so tired that all he wanted to do was sleep and sit around. We talked to the Dr. and we have had him on 1mg since and it has helped him tremendously. He has always had certain food allergies and problem with his stomach but the last month or so he has been getting nauseous and sometimes vomiting at night. This only happens at night usually after 9pm. I took him to the Dr. about two weeks ago and they schd. an appointment with a GI Dr. on the 29th but the nausea got so bad that the Dr. gave him Finigrin to take and told us to stop the Intuniv until we saw the Dr. on the 29th. He stopped the Intuniv on Saturday and his behavior has been so bad this week that the teachers can’t handle him, he is not taking naps at school and he can’t sleep at home. My husband and I are at our witts end and we feel so bad seeing him going through this. He has not gotten sick since he stopped taking Intuniv but we started him back on the Intuniv today b/c we did not know what else to do b/c he can’t function at school or at home. I plan on speaking to his Dr. today. If they do have to switch his meds can anyone out there recommend one they have tried that works good and is close to what intuniv is. We really don’t want him to be on anything like Adderoll or Reglan b/c of his age but what else is out there for kids his age.
Comment by @Lisa — Jul 15th 2010 @ 12:46 pm
Author Shannon to @Lisa:
My son is 12 1/2 years old now, but we started the journey on medications when he was the same age as your son. I’m assuming that your son is diagnosed with ADHD. My son has been taking Intuniv as an adjunct to his Concerta. Now the Intuniv was prescribed for the tics that began as a result of the Concerta and maybe the OCD. Nonetheless, the sleepiness you speak of is common throughout most of the posts. As is the advice to consider changing the time of day which he is dosed. For my son, I found finally that administering it between 7-9 pm allowed him to be more alert during school. Some sleepiness in the afternoon, but nothing like it had been when he was taking it in the morning.

Have you considered Focalin XR? My son used that for a long time with great success. I believe as young as 5. I do know a couple of other 5 yr olds taking Focalin XR right now.

You and your family are on the front end of a marathon, not a sprint. Medications are a gift from science, but the reality is that we have to go the “trial and error” route to get to the best one (s). Trust me, as the mom of a child on medication for over 7 years, please do not rule any options out right now. Mostly, because as time wears on changes are inevitable in meds anyway. What I refused to consider when he was young wound up being some of what we eventually tried and was successful with-made me wished I had given in sooner.

My son has experienced very intense GI issues as well, though not necessarily attributed to the Intuniv. However they did resurface at the same time he has been taking Intuniv. He has periodically experienced debilitating nausea in the evenings and overnight. (When the day is done and there are no distractions is when it would start) Our pediatrician sent us for a standard xray which showed the proof. We discovered that he was constipated throughout his entire intestinal tract. Blockages both upper and lower. Nausea and vomiting are definitely side effects of chronic or sever constipation. Just a thought from our experience. And, I will point out that his GI issues have been recurring since he was born.

I know he is so young and you are so scared of what the future holds for him. All that I can assure you of is that with loving parents he will be fine. Not always wonderful, not always awful-but overall, he will be okay. What is bad for him is likely ten times worse for you as his mother. You must be worried about today as much as five years from now. I know I was every day. Only with experience and time have I seen that this is a trial with really bad days, but when there are successes they are sweet. And, sometimes we have to find success in chunks as small as a moment. You seem like a wonderful mother looking for the right answers for her son. Just remember that it is a long marathon. Hang in there and let us know how you are all doing.
Comment by Shannon — Jul 15th 2010 @ 1:25 pm
Shannon, thank you so much for the comment and your information. It is so comforting to know that there is another family out there going through the same issues. I have often thought lately that I am just an over reacting mom who is just looking for a reason to find something wrong. I had tried so many things to help him before we started any medication from eliminating red and yellow dyes to eliminating certain foods that I thought were causing the problems. Sometimes they helped and sometimes they did not. I worry about his health and well being so much and I just want him to be happy and enjoy life as a kid like all the other kids out there. Thank you again for your post it has really relieved a lot of my anxiety.
Comment by @Lisa — Jul 15th 2010 @ 2:00 pm
I have recently changed the time that I give my son his Intuniv from in the morning to in the evening and that has really made a difference in how sleepy he gets during the day. He no longer gets up at 3-4 am and is finally getting a full nights sleep since I don’t know how long. That in and of itself makes a big difference in his behavior. I do home school him and he still has a little trouble with focusing while doing his work. Believe me nothing like when he didn’t take any meds, but none the less it is still a problem. Earlier comments suggest a low dose of Focalin in the morning before school and I that I will discuss this with his physician. I will let you know how that goes.
Comment by Lisa — Jul 16th 2010 @ 1:42 am
Lisa, our son is 12 and we have been tested, poked on, evaluated by the school, appointments with Phyc’s , docs, and therapist both OT/ and speech for our son.
He has currantly been on Intuniv/3mg for 10months, he also takes Porzac for anxiety, concerta during the school year. Our experience has been great, but I saw yours and Shannons post about the Gi problem. My son to has had stomache aches, throwing up etc..Its seems to come and go?
The best thing you can do is a parent is be his closes advocate ! I can remember back to age 5 and how extremley nervous I was about everything we were going thru with him, that was 7 years ago and I promise things will get better. You will find what is best for him thru trial and error. More importantly you will be more educated about your son and in turn not feel like you are in a dark closet tring to find your way to him..
I will make one suggestion and that is if you are only seeing MD’s? You might find a reputable “psychiatrist” for these medications. I was alot more impressed with his knowledge and how these meds effect the mind and body.
I also know with experience that medicaitons are always subject to change..we have tried so many dif cocktails and varieties, anit-dep, stimulants, non-stimulants etc..
that I could run my own pharmacy out of my med cabinet..lol
Good Luck and hang in there
Kathy
Comment by Kathy — Jul 16th 2010 @ 8:47 pm
I too can run a pharmacy! LOL Also, you might try finding a pediatrician that specializes in ADHD. I found one and he was so much better than the psychiatrist with all the druggies coming into the office! Not really something I want my son to see! LOL
Comment by Laura P — Jul 16th 2010 @ 8:52 pm
Thanks ladies, I have not taken him to a psychologist, but the pediatrician that he goes to specializes in ADHD. Believe me there is a big difference. Most pediatricians are in over their head when it comes to the diagnosis and treatment of ADHD and ODD. She listens to everything that I report as well as talks to my son to get his perspective and treats accordingly. My son has not had the GI problems that many have reported, other than occasional constipation, which is a side effect of Intuniv and probably secondary to dehydration, which is another side effect, so watch their water intake. I do monitor how much water he drinks and he is to the point that he will tell me if it has been more than a day since he’s had a BM. If he needs it I give him a few prunes, thankfully he likes them , and up his water intake and that seems to resolve the problems. Thanks for the advise! I appreciate having others to bounce ideas off of and learn from.
Lisa
Comment by Lisa — Jul 16th 2010 @ 9:51 pm
Author: Shannon
You are all right!!! Psychiatrist for meds, psychologist for the much needed talk therapy. What a bonus if you can locate a pediatrician who specializes in these particular issues. I went the psychiatrist route as it became more complicated around age 9.

Kathy, you are so right about the water! They cannot ever drink enough. My son’s GI problems have improved as has his headaches.

My son is also 12 years old and the last 7 years have been hard. But, I can definitely say that experience is your best friend as a mom. I’m not sure that things are necessarily better or easier for my son but rather that we have BOTH learned so much about his “stuff” over these years. This knowledge allows both of us to be less fearful and I’m much better at helping him when something comes up. I will say a great deal of my coping skills are a result of a wonderful psychologist with brilliant ways to approach so many things. And, as time has worn on he has seen less of her. Partially because I’m just better equipped to help, but his self confidence is there finally. And, when it weakens I’m there to tell him I believe in him and that he can do it. Sounds so simple, I know.

The psychologist also helped me deal with the inevitable guilt that comes along with all of this as moms. And, the fear.

Every time you hear yourself say, “This is just so hard,” remember…that’s because it IS hard. Your feelings of fear, exhaustion, sadness are all real. The psychologist used to tell me that if I didn’t feel that way she would worry more about me than my son! “Welcome to normal,” is what she would say. I would respond with, “Really? This is it??” Yes. . .this is it.

The one thing we don’t need a prescription for? Laughter.
Comment by Shannon — Jul 16th 2010 @ 10:53 pm
My son is on his first week of Intuniv (1mg) and so far it’s been pretty good. He is tired, but not too bad yet. I’m thinking about switching him to the afternoon dose instead. I’m a little worried about moving him up to 2 mg/day that it might be too much. Has anyone had any problems with increased irritability on this? He seems to be a lot more irritable this week. Maybe, it’s just that he’s tired. Does it get better?
Comment by Heidi — Aug 2nd 2010 @ 8:18 pm
Anyone have GI issues with Strattera? We went with this because our psychiatrist didn’t think Intuniv was a first line medication for ADHD/anxiety.
We’ve stopped it now because of diarrhea and GERD like issues, which he described as chest pain. He checked out normal at the urgent care.
Just looking for information.
Thanks.
V
Comment by Veronica — Aug 2nd 2010 @ 9:12 pm
Our son has been on intuniv since May 2010 (1mg) and since last Thursday he has been on 2mg (1mg in the morning and 1mg in the evening). He is 5 1/2 years old. He will be starting Kindergarten in a couple of weeks so we are going to keep giving the 2mg to him at least that long to see what happens. He has been a little more tired than normal but hopefully once it gets into his system he will get better. He does seem a little quieter and irritable at times but as far as his behavior it has improved. Our son has had some GI problems but that have been occurring for a while now. He is actually having some upper GI test this week. He has had vomiting, constipation and stomach. He has not had any diarrhea. When it comes time to give him 2mg and see what happens. You may want to ask your Dr. about splitting up the dosage with 1mg in the am and 1mg in the pm. It has worked better that way with our son.
Comment by @Lisa — Aug 3rd 2010 @ 3:14 pm
I do have one question if anyone can help. Since my 5 1/2 year old son has moved to 2mg of Intuniv it seems that his anxiety and worry have gotten worse. He has always been a worrier but it seems to have gotten worse since he moved to 2mg. Does anyone know what I can do. I did not know if this is a side effect of the intuniv or not. Does anyone have a child this young on Intuniv and something for anxiety.
Comment by @Lisa — Aug 3rd 2010 @ 3:40 pm
@Lisa,

My son had the very high anxiety on Intuniv and Vyvanse (when he was on that) and facial tics also. The poor child was a bundle of nerves all the time. Every little thing was high anxiety for him. As soon as I stopped the Intuniv, the anxiety stopped also. I put him back on just Adderall XR 15 mg. It does not help all of his symptoms, but does not create more issues either.
Comment by Renee — Aug 3rd 2010 @ 3:57 pm
Has anyone had problems with sleep walking in their kids since being on Intuniv. Our son has been on Intuniv 2mg for a week now and on days when he gets a nap at school he will not go to sleep until 11 at night and he is up at 4:30 am. On days he does not get a nap he is exhausted and has been sleep walking at night. For a 5 1/2 year old to be doing this it is really scary for a parent. I spoke with his Dr. this morning and he said this was just a sleeping disorder and it was not related with Intuniv. Our son has never sleep walked until this past week. Any advice from someone this has happened to would be nice.
Comment by @Lisa — Aug 6th 2010 @ 4:14 pm
I have gone through most of the posts here and appreciate the input. My daughter has been on Intuniv for about 10-11 weeks now and is at the 3 mg dose. She takes it at 8 pm at night, goes to sleep and night and 90% has slept well. The first several weeks she had a lot of drowsiness but fortunately we did this during the summer and the drowsiness subsided. The last 6 weeks of summer she attended summer school and lately I notice that she has been so tired after school, wanting to take a nap. She is back in regular school and her afternoon tiredness is certainly affecting the new homework schedule and she is irritable (of course). I wanted to try to give her the Intuniv in the morning but her psychiatrist said that would make her afternoon drowsiness worse. I’ve read a lot here that suggests afternoon drowsiness and moving the dose to the evening, which as I stated, is fine for us except for the inconvenient sleepiness during “homework” time (which as you all probably know, is torture enough as it is). I guess what I am asking is, for those who have afternoon drowsiness, what time do you give your Intuniv? A lot of the blogs did not include times you dispensed it, although some did. Thanks for your help. Also, her psychiatrist said I could give her 5mg of Ritalin after school to help and I am going to try that today. Her psychologist suggested we go the morning route for Intuniv but her psychiatrist, as I said earlier, disagrees because she says it will make the afternoon drowsiness worse. Other than that one time a day, She does very well on Intuniv, is also on Concerta 54 mg (5:30 am), Zoloft 50 mg (5:30 am), Ritalin 5 mg (5:30 am), Intuniv 3 mg 8:00 pm and Trazodone 50 mg (8:00 pm). Thanks again for your help.
Comment by Laurie — Aug 6th 2010 @ 6:41 pm
Laurie,
we had to start giving intuniv in the AM because when our son took it in the pm, he was falling asleep in class (am). It has leveled out over the months and we do not notice a whole lot of drowsiness anymore. He also takes Concerta (school year) and Prozac. He does however go to sleep very quickly at bedtime… I also know there is some differance in what they eat when they take it (no high fat foods) we wait 30 min or so before we eat. anyway, I think its like anything else, you have to adjust things that fit your child, they are all not going to be the same, (and i think we all know that better than anyone, right-LOL
Good Luck !
Kathy
Comment by Kathy — Aug 6th 2010 @ 7:45 pm
My daughter has been on Intuniv for about 4 months now. When she first started, I was giving it to her in the am before school and she would sleep in class. So I switched her to nights (5:30 p) and it helped alot withthe drowsiness. Now that summer is here, I recently started giving it to her along with her Concerta in the am (7:00 a) before summer camp as her body has acclimated itself to the Intuniv and the sleepiness has worn off. It may take a while, but keep doing the night dose and after a few months, switch to the moring and see if that helps. Julie
Comment by @ Laurie — Aug 6th 2010 @ 8:30 pm
Our 12-year-old daughter started Intuniv about seven weeks ago. When we tried to increase to 3 mg; she woke up very early, often in the middle of the night and was extremely tired and irritable during the day.
She has a history of being really sensitive to medication and tics and hallucinations with Ritalin use. Before the Intuniv, she took short-acting Focalin two to three times a day as well as Prozac in the AM. Now, she usually just takes 2 mg Intuniv in the evening and 15 mg Prozac in the AM. Occasionally she will also take 2.5 mg Focalin tab. Overall, her anxiety is slightly better, especially her phobia of flying bugs. However, her “moods” are not necessarily better. Does anyone know anything about the consumption of high-fat foods with Intuniv? Do they cause a problem with absorption? Thanks for all the info sharing.
Comment by JaLynn — Aug 7th 2010 @ 5:01 am
@Shannon,

Your son resembles my son in many ways. My 10yr son takes prozac and intuniv together. What dosage does your boy take for both? My son has ADHD with anxiety and OCD. We tried prozac first. It helped with the anxiety and OCD a bit, but his impulsivity needed to be controlled. Intuniv has helped. He’s on 20mg Prozac and 3mg Intuniv. I’d like to take him down to 10mg Prozac eventually. Also, I’ve read that it’s not recommended to take Prozac w/Intuniv. Not an expert, but apparently Prozac interferes with how the body metabolizes Intuniv. Have you read/heard the samething?
Comment by Greg — Aug 9th 2010 @ 2:08 pm
@ Greg

It always so nice to speak with a parent who has similar issues as my son. As you said, we are not doctors but I will share with you what his psychiatrist has been doing for my son.

My son’s OCD has always been the most prevalent issue-we did not start medicating for ADHD until 5th grade. He is going into 7th grade this fall. The two primary meds used to treat OCD are Zoloft and Prozac. We learned early that he could not take Zoloft. However, we have had success over the years with the Prozac. The therapeutic dose for kids on Prozac is 20 mg. We had to raise his dose to 30mg about a year ago as the OCD was simply running his life. When that happens the resulting depression and self-isolation deprive him of his life. He did however start with very low doses in previous years and that allowed the doctor to increase his dosage as needed. I cannot imagine my son without Prozac as I so clearly remember what his life was like before meds.

Allow me to also interject that he started the Prozac when he was 7 years old. The balance of medications has grown more difficult as he has gotten older with the approach of puberty around the corner. The good news is that by the time he goes to high school it will be more likely to stay level. It is a blessing he was diagnosed so young.

So, he is on 30mg Prozac, 3mg Intuniv and 3mg Concerta. He only takes the Concerta and Intuniv during the school year. The Intuniv was prescribed to alleviate some tics which had developed related to the Concerta. Though he is prone to tics with the OCD, they stop when he stops Concerta. We’ve tried many different ADHD meds and always return to Concerta. The doctor had thought at one time that he might just take Intuniv for ADHD, but we found it wasn’t effective enough for the to control ADHD. Over the summer he has experienced some serious sleep problems and we have been using Tenex (short acting Intuniv) to aid with sleep.

As it would happen we are headed in to see the doctor today and I am going to ask her about the interaction between Prozac and Intuniv. I have great respect for her and she has a stellar reputation with several doctors I know. Most of all I trust her. So, I will post later and let you know what she says.
Comment by Shannon — Aug 9th 2010 @ 3:16 pm
@Shannon,

Thanks for your prompt response. I’m very interested with what your doctor says about Prozac/Intuniv interaction.
Comment by Greg — Aug 9th 2010 @ 4:22 pm
@Greg,

Just returned from doctor and she emphatically said that there was no issue with the metabolism of Intuniv as it relates to Prozac. Absolutely talk about it with your prescribing doctor, but I’m glad I asked! There really are so many good choices for ADHD. I realize that our boys with OCD as well as ADHD are limited to some degree with med options. Focalin XR and Concerta XR are the two that we’ve tried. For my son the doctor said we are really limited to those two and Intuniv. The OCD makes it slightly more complicated.

My son is a couple of years older than yours but I can tell you by the latter half of his fifth grade year it became evident to HIM that he needed the ADHD med during school. Even he was frustrated with his inability to focus, sit still and be productive. And, he was keenly aware that his peers had had enough of his ADHD.

Growing kid’s bodies change so rapidly which can make us have to dance to keep up with what works for meds. My goal for my son is to be content with himself. As well, I hope that he will continue to recognize when it is getting bad and ask for help. And most of all, I want him to grow up with the knowledge that he is incredibly brave. All of our kids are brave! Every day they get up and face the world with all of the unknowns. And even though it can be terrifying, sad, and incredibly hard; they do it. And isn’t that what bravery is all about? I am intensely proud of my son. I had once hoped to get him off meds eventually, however, I recognize that will never happen. And, I’m good with that reality. He is a truly intriguing, loving kid that I wouldn’t change for anything.

Let me know how it goes for your son. I don’t have an opportunity to dialogue with anyone who has similar issues very often. This site is a lifesaver!
Comment by Shannon — Aug 9th 2010 @ 5:38 pm
My brother, who is 7, is in the process of being properly diagnosed. Although the adhd and impusivity diagnosis seem to be correct, our family aswell as his current dr believe him to be autistic vs. mentally retarded. MR is the diagnosis given by the school districts evaluation, which was very on the surface.( the test they gave was not the least bit deep enough for a diagnosis) We live in a small town and the resources for this type of issue is very limited. Anyhoo, he has been taking this drug for about a month and a half. 2 days ago he grabbed a knife and said he was going to stab my son, his nephew. My mother took him to the room and asked why he did that, and he said he was just playing. My little brother is very sweet, and has never tried to hurt anyone intentionally. He has also been falling asleep randomly without warning and sleeping super hard. Early this morning he woke up multiple times screaming and saying that someone was talking to him or telling him something. Later on, while he was at summer camp he woke up from his nap screaming, “IT HURTS!”. Everyone near was frightened. He asked the counselor to touch his chest and she witnessed his heart beating rapidly. also every now and then he has complained of a headache. He is not very verbal so it is hard to get a clear understanding of what is going on with him, but it is truly scary. His next appt. is Thursday so wish us luck…
Comment by Lauren — Aug 18th 2010 @ 3:53 am
Hi Everyone!! My 9 yr old son takes 3 mg of Intuniv and has the same problem as a lot of the other kids- insomnia. I asked the dr if it was the meds and he was emphatic that it was not. I’ll definitely be going in to our next appt armed with info from this board. We tried melatonin, but had no luck. He was literally up all night. When he would sleep (which was rare) he would be up for the day at 3 am. So they switched us to seraquel (sp?). I hate giving him that medicine!!! But my son was like a zombie without it. With his anxiety and depression, the ADHD meds he can take are limited, but hopefully we can try something else.
I have a question about eating… has anyone noticed a change in taste? My son won’t eat ANYTHING now. He says it doesn’t take good and that his taste buds changed. We rarely eat processed or fast food, so getting it used to be a real treat and he’d devour it. He won’t even eat chicken nuggets now because they taste funny. Again, the dr says its not the intuniv, but it looks like he was misguided about the insomnia.
Thank you for this board! We resisted medicating our son for 2 years, and I worry about the damage we caused in not medicating him sooner. He was such a sweet and gentle boy, and now he’s so angry and frustrated all the time. You never know what the right thing to do is. Perhaps if we had medicated him sooner, he would not have become as frustrated with his inability to control his behavior and angry at the punishments he got because of it. All I know is I beat myself up either way. It’s hard not to blame yourself for your childs mental issues, even if you did everything you could to help them. I appreciate all the other parents going through this and their input. Parents not affected by these issues have no idea how hard each day can be watching your child suffer.
Comment by Lisa — Aug 22nd 2010 @ 12:08 am
My son was taking 3mg Intuniv, 18 mg concerta and 10 mg Celexa. We dropped the Concerta to give Intuniv a try and it has worked to some degree, He is happy and smiles more his attention is acceptable at home we will see when he gets to school but the biggest problem is finding the right time to give him the meds. We statred in the late afternoon but that made him tiredm nap tired, in the middle of the next day. I tired shiffting the time back wards and forwards to see if we can land the periods of sleepiness during the late evening. It appears the best time to do this is in the morning but he really gets cranky, not tired but just in a real ugly mood around 3pm and sometime that last till the morning). Just wondering when others are giving the Intuniv and what they have learned about time of day. He has never had a problem waking up at night regardless when we give the meds.
Comment by jeff — Aug 23rd 2010 @ 1:24 pm
@ Lisa
I completely feel for you and your situation. Trust me when I tell you that sometimes it takes finding the right set of doctors for your child. If your doc didn’t know that the Intuniv could cause insomnia then I would question his background in treating ADHD and the meds associated with it. With my boy (9 years old as well) I gave him the Intuniv at night with dinner and it would help him sleep. I had to switch to the generic Guanfacine because of the cost and it doesn’t come in a long acting form. I have to give him 1 mg in the morning, lunch and dinner. During the morning and lunch ones, the tiredness doesn’t really affect him because of the stimulant from the Methylin ER (generic Ritalin SR) that he takes. The night time one helps him go to sleep. He’s never been a good sleeper and it hasn’t stopped him from continuing to wake during the night. He just crawls in bed with me and goes back to sleep. As for the food thing, when my son was finally diagnosed with ADHD when he was 7 1/2 he weighed 82 pounds. Within 4 months he went down to 67 pounds which was finally a healthy weight for him. He just got on the scale this weekend and is back up to 82 pounds a year later but hasn’t grown an inch. It bothers me because he exercises every day and I’ve never bought junk food or desserts – he gets those 100 calorie packs for snacks and sugar free pudding for desserts – healthy main portions of the rest of his meals and he takes Kung Fu every day. Doesn’t make any sense except maybe after switching to these latest meds his metabolism slowed down? Who knows – we’re going for an ADHD med check with his doc tonight and I’m going to ask his advice on it. The last thing my kid needs is to start being teased because of his weight on top of his behavior issues. Overall, besides the weight, the combination of meds he is on seems to be working well for now. I know it will change as he grows and I so don’t look forward to searching out a new combination. But we, as parents of ADHD children, all know that what we want most is the best for our children. Don’t feel badly about not medicating him sooner – I was sure from about 2-3 years old that my son had an issue but it took me until he was 7 1/2 to get the doc and teachers to agree with me! Just hang in there Lisa and know that we are all here and are willing to listen if you need to vent!
Comment by Laura P — Aug 23rd 2010 @ 1:30 pm
@Jeff
When I was giving it to my son at around 6-7 pm gets him to sleep by about 9-10 pm and then with the stimulant in the morning he was fine! As I mentioned in my previous post I had to switch to the generic but still that night time one helps him sleep. I notice with the afternoon 1 mg of the generic if he’s not kept busy doing something physical or with his brain, he gets sleepy. I subscribed to this quarterly magazine called ADDitude and it has great insight on everything we go thru. One of the most important things that can help our kids is physical exercise – martial arts being one of them. My son is in an after school (and summer camp) program at a Kung Fu School and it helps him tremendously to get out some aggression or anger if he has any as well as the benefits of exercise. It also makes him tired enough to go to sleep at night! Hope this helps!
Comment by Laura P — Aug 23rd 2010 @ 1:34 pm
My son has been on Intuniv for about a month now – he takes 1 mg in the morning and 1 mg at night. I hear that a lot of kids eat less with this medication, but my son has been eating more and has put on a lot of weight. Anyone else have this issue? He has put on 5 pounds in the last month. He also takes Risperidone which has made him gain weight as well. Also, he is very irritable on this medication. Any thoughts????
Comment by Heidi — Aug 23rd 2010 @ 4:22 pm
My son is 6 and has ADHD and has been on 1 mg of Intuniv for a month now also. The medication is working as far as focus, attention, and behavior. He is not able to take stimulants, which are normally perscribed to children with ADHD. At first he fought the daytime sedation but his body seemed to get used to it and he was doing better. Then starting last week the night time waking and Insomnia were unbearable. Our doc suggested melatonin which we also tried but it did not help him sleep through the night. After several nights of insomnia and night-waking daytime was horrible. He was grumpy and tired- How can he go to school like this? We took him off the intuniv for two days and he was unbearable with his ADHD. Why can’t we find something that works for him. Our specialist said the Insomnia is caused because their blood pressure drops during sleep and causes them to wake. She suggested a high protein snack before bed to help with this. I am so tired of trying to find some way to help him. It has been a nightmare.
Comment by Karina D. — Aug 24th 2010 @ 10:32 pm
@ Karina
I know you are tired – we all are – but it’s our job after all. We all want our kids to be happy and healthy and sometimes it’s up to us to persevere and find the way. You didn’t mention why he can’t take stimulants. What time of day do you give him the Intuniv? I’m kind of curious as to why it is affecting him so strongly at only 1 mg. You might want to get another docs opinion. Just hang in there and subscribe to this board, it has helped me tremendously if for no other reason than to know that I am NOT alone in my quest to find the best remedy for my boy!
Comment by Laura P — Aug 25th 2010 @ 12:52 am
Thanks Laura. There is a small number of kids who are not able to tolorate stimulants. He has been on three- all the lowest doses possible and could not tolorate the side effects. His regular pediatrician said that 80% of her ADD/ADHD patients are fine on stimulants and they help. But that there is a small number 20% who are not able to tolorate them. My son is in that 20%. When the lowest doses of stimulants make you like a Zombie- it is a major warning sign that it is not good for your child. We have tried Intuniv at all times of the day. Morning, afternoon, and night. All three times are causing him to wake during the night. The melatonin is not helping either. The specialist we just started seeing ordered blood work so we are waiting on the results. She thinks it is something more than ADHD. She said most ADHD kids have other underlying problems that need addressed along with their ADHD. She is a special needs pediatrician who believes in looking at the entire body as a whole- instead of just treating the ADHD alone. I like her and the fact that she questions everything. I also love our regular pediatrican but she has not been able to help us.
Comment by Karina D. — Aug 25th 2010 @ 2:12 pm
@Karina – I’m glad your pediatrician is going the extra mile and testing for other things. I’ve been told that Bipolar and ADHD are very similar in their symptoms and ADHD is often misdiagnosed. Not saying your son has bipolar – just saying it’s good to look at all angles. My son has tried several ADHD meds and can not tolerate alot of them. He seems to do best on Adderral XR 15mg. When I’ve tried other ones, he either zombies out or becomes paranoid, fearful, develops tics, or has such extreme highs and lows that it’s hard to follow him. Good luck and remember you’re doing a good job!!!
Comment by Renee — Aug 25th 2010 @ 2:19 pm
@ Karina
I didn’t know that about the 20%. What a shame. It sounds like your specialist is a great doc – I finally found a pediatrician that specializes in ADHD (what a Godsend) instead of taking my boy to a psychiatrist that just kept wanting to give me sleeping meds for him (um, he didn’t have a problem sleeping so why would i want sleep meds for him). Anyway, I love docs that treat the body as a whole – he could have an imbalance of some vitamin in his body or like Renee said, it could be he has bipolar or Asperger’s even. Or maybe, it’s just that he’s a young boy, only 6 years old, and his body can’t take the meds yet. I’ve read about some natural things – haven’t tried them myself – but one of them was Focus Formula. Maybe a natural thing might work for him? Just be patient with the doc and the tests – it will all eventually work out and your boy will be wonderful and happy! Hang in there!
Comment by Laura P — Aug 25th 2010 @ 2:49 pm
@Laura & Karina,

I haven’t tried the Focus Formula, but I did try the TicTamer from the same company and it worked great! I’ve been thinking about trying the Focus Formula (and they have a couple others on the site), but I get so leary about trying new things and mixing things that I’m not sure of. Especially when he’s finally in a good place! If anyone has ever tried it, I would be curious to know what the results were.

Also, don’t forget diet! My boys cannot have anything with red, orange or yellow dye, hot dogs, etc. There are definate things that set them off. I kept a food / mood journal for them to see what was a trigger for them. Hot dogs are major! You never know – you could find a few things are instigating things.
Comment by Renee — Aug 25th 2010 @ 3:27 pm
Thank you Renee and Laura for your thoughts. I was having a really bad day yesterday and was feeling sorry for myself and my son. As much as I wouldn’t wish this on anyone. It is nice to know that I am not alone in this battle to help my son. There are so many others just like him and parents who feel the same as I do.
I will let everyone know what we find out about the blood work. I also have wondered if it is ADHD or something else. Our specialist said that many kids with ADHD also have other problems along with it or it was misdiagnosed. I have not tried the natural remedies yet. We were waiting on the blood work the specialist ordered. She also believes diet, vitamins, and supplements play a major role in behavior in these kids- so I am interested to see if his blood shows something else and we can help him. I have a feeling she already has some diet changes and other things in mind.
Comment by Karina D. — Aug 25th 2010 @ 4:42 pm
When we first started having our son diagnosed and we were told by several doc’s that he was ADHD. After several rounds with stimulants we finally desided to put trust in a child physiatrist recommended by the neurologist that tested our son. He, as someone said above, told us that most ADHD is misdiagnosed and that almost always it is comorbid with another problem ie..aspergers, autsim, pdd-nos, bipolar, etc..We tried to tell ourselves for a couple of years “oh he just has ADHD” but knew it was more…To our dismay, our son fell within the pdd-nos catagory along with exspressive launguage delay. Therefore we do our best to treat the symptoms with meds. Its been our experience that its all trial and error with meds, finding the best for your child and often that will change from time to time. Along with that comes patience and time to see how they all work together..God Bless us all as we have to work extra hard for our little guys to insure their happiness and acceptance.
hang in there! Kathy
Comment by Kathy — Aug 25th 2010 @ 8:26 pm
@Kathy,

Sorry to hear about your son’s diagnosis. The good news is that at least you know what your’e dealing with and can hopefully find the right combination of meds and treatment to help him. I hate to have to label our kids, but unfortunately that’s the only way they can get the help and support that they need.

Keep up the good work and patience
Comment by Renee — Aug 25th 2010 @ 8:34 pm
To anyone and everyone who thinks they can tell parents of ADHD children what they should and should not be giving them- my son was diagnosed at 4 with ADHD and we tried everything under the sun from therapist to caffinee diets and nothing worked then one day I picked up my 5 year old from kindergarten and he told me he never wanted to go back tp school because ” i am stupid and dumb, I can’t write my letters like the rest of the class”. I was so heart broken to see a 5 year old depressed all because of people like you who made me think that putting him on medication would make me a bad parent. He has been on medication for the last 5 years and is now one of the top kids in class, with no social issues who players 2 sports and the guitar. He is a happy child who loves being able to do his school work well, play on team sports where he can listen to the coaches and play the guitar because he can focus during lessons. My only regret is not putting him on medication soon, maybe he wouldn’t have lost happy childhood years!
Comment by Traci — Aug 30th 2010 @ 1:43 am
To anyone and everyone who thinks they can tell parents of ADHD children what they should and should not be giving them- my son was diagnosed at 4 with ADHD and we tried everything under the sun from therapist to caffinee diets and nothing worked then one day I picked up my 5 year old from kindergarten and he told me he never wanted to go back tp school because “I am stupid and dumb, I can’t write my letters like the rest of the class”. I was so heart broken to see a 5 year old depressed all because of people like you who made me think that putting him on medication would make me a bad parent. He has been on medication for the last 5 years and is now one of the top kids in class, with no social issues who players 2 sports and the guitar. He is a happy child who loves being able to do his school work well, play on team sports where he can listen to the coaches and play the guitar because he can focus during lessons. My only regret is not putting him on medication soon, maybe he wouldn’t have lost happy childhood years!
Comment by Traci — Aug 30th 2010 @ 1:53 am
my 7 year old has been on Intuniv 1MG for 3 weeks. He was very tired for the first 7 days. He now seems to be his normal self except he gets very angry when things don’t go his way. I am wondering if the 2 MG will help him with getting so angry and frustrated. Need to speak to the doctor about increasing to the 2MG. Has anyone seen a difference going from 1MG to 2 MG?
Comment by karen — Sep 6th 2010 @ 2:15 am
When my first 14 yr old high function autisic son first starting taking Intuniv, he started on 1 mg at night. Even though he was taking it at night, it still made him sleepy and even more distracted. His neurologist put him on the non-extended release form of Guanfacine and he took it morning and evening. Once his body adjusted to this, he went back to the Intuniv 1 mg at night. He is now up to 2 mg, but he still takes it at night. Intuniv has really helped him pay attention and get things done faster. This has lessened his frustration problems and really reduced the number of meltdowns. He stills take the 2 mg at night. I am reluctant to switch it to morning. He started the Intuniv in March 2010, so next time we see the neurologist, I am going to ask him what he thinks.
Comment by Kari — Sep 6th 2010 @ 3:20 am
I have a 15 yr old autistic son. Its 1:24am and he and I are still awake. I’m exhausted. I’ve been giving him Intuniv for about 5wks now and there is no peace with him. He screams constantly and is veey aggressive. He close to destroying everything in my home. His pediatrician suggested we use this to help with aggressive behavior and his desire to self stimulate(puberty). For a wk or 2 he would come home from school with not much of an appetite and he would lie down (which was ok) But now he just seem to be all over the place. He want take the pill himself so I try to put in food which isn’t always successful. If I crush I
the pill it don’t dissolve. HELP I give him Seroquel 125mg which has always worked so it seem to b the Intuniv. He’s aggressive sometimes in school. So I don’t know what to do. Any information would be appreciated
Comment by Tami
Comment by tami — Sep 7th 2010 @ 5:54 am
Has anyone had trouble with “heavy legs” on intuniv. My 12-yr-old, 75 lb, daughter complains that her legs feel unable to get up stairs and sometime even walking is a chore. She’s only taking 2 mg, but we’re going to back down to 1 mg and see if it helps.
Comment by Jalynn — Sep 7th 2010 @ 7:29 pm
I, after many years of tears and fighting to NOT medicate, am considering Intuniv, but after reading the leaflet and all of these comments I am terrified. My 9 year old is no longer hyperactive but has been struggling a lot with his schoolwork. I am not sure what other options I have. Does this med drastically change appetite?? He is already so small. Also, I was instructed to give this in the morning, sounds like evening is the best time though. Ugh, so overwhelming!
Comment by Desiree — Sep 8th 2010 @ 5:15 pm
My son is 11 and has been on adderal …concerta… resperidone.. abilify …and now intuniv
Adderal worked fine for him but it didnt stop his axiety which is his biggest problem so we tried the rest.. he started getting facial tics the resperidone sopped that went to abilify facial tics again so we figured an allergic reaction to an ingrediant in it but now he is getting the tics with the intuniv and i dont know what to do???? i love how he is when he is on this medication and am wondering how a drug that is supposed to prevent tics is causing them
Comment by kristie — Sep 8th 2010 @ 10:40 pm
Hello, I read Tami’s post and I understand the being up in the middle of the night! What time do you give your son his Intuniv? When I gave my son Intuniv in the morning he was drowsy during the day and awake at 3am and not about to go to sleep anytime soon. I began giving him Intuniv at 6pm and by 9pm he was ready for bed and slept through the night. Also, I didn’t know if you already knew, Intuniv is an extended release medication so it shouldn’t be crushed or split when given as it could release too much of the medication at once instead of overtime.

Jalynn, have you tried taking you daughters blood pressure when she complains of “heavy legs?” Intuniv can decrease blood pressure. Does she drink an adequate amount of water? Dehydration will also make you feel like you are dragging. With this medication it is extremely important that you stay hydrated as it will help with your blood pressure and also help with the constipation that is also associated with taking this drug.

Desiree, one great thing about this drug is that it doesn’t take the appetite away like stimulant drugs. My son lost 10 pounds on Vyvanse and believe me he was already little. When I switched him to Intuniv his appetite returned and he gained the weight back. He is still a little firecracker and very active so he doesn’t have trouble with gaining too much weight. As far as the time to give it goes, it works best for my son at night about 6 pm.

Kristie, how long has your son been on Intuniv and what other medications, if any, is he on?
Comment by Lisa — Sep 10th 2010 @ 3:22 am
He has been on Intuniv for 3 weeks now… i didnt notice ay tics with 1 mg then on the 3rd day of being on 2mg i saw them… called ask a nurse (it was labor day weekend and no one was in the dr.’s office) and she said to give him the 1mg. again and on tuesday when i finally talked to his dr.’s nurse she said the same thing.. i noticed the tics being not as strong as they were the day before but still there.. i am not sure what to do here…everything (except adderal) is giving him facial tics.
Comment by kristie — Sep 10th 2010 @ 11:50 am
With my daughter’s “heavy legs”, I do suspect a blood pressure problem, and have tried to increase fluids, but I can’t monitor intake at school, where she has lots of stairs to climb and doesn’t want to leave class all the time for bathroom breaks. We did cut to 1 mg and in three days have noticed improvement in her energy and sleep. On the other hand, her behavior has been more erratic and she’s had particular trouble getting moving on school mornings.
Has anyone tried combining intuniv with short-acting tenex? We were thinking about giving 1 mg intuniv plus a tenex at bedtime since the intuniv does not come in 1.5 mg tabs.
Comment by Jalynn — Sep 10th 2010 @ 1:26 pm
I am on week one of 2mg…My son is complaining of being VERY tired. He says he has trouble staying awake in class, and I am noticing he is EXTREMELY moody. I did read these posts and decided to start him on it at night. He takes it at 5:30 every night. I don’t believe he is waking up early morning hours. Being the choice to put him on medications was NOT an easy one, I am still trying to have an open mind…if he continues being THIS tired and emotional I may just take him off. Does anyone know if these things are temporary and maybe I just need to wait for the dose to level off???
Comment by Desiree — Sep 22nd 2010 @ 11:20 pm
Hi Desiree, I understand your concern, but this really is one of those drugs that you have to give some time. He will adjust and not be so tired and emotional. I know that sometimes waiting is hard but you should start seeing improvement after a couple of weeks. Just let his teachers know so that they will understand. Hang in there!
Comment by Lisa — Sep 23rd 2010 @ 1:38 am
There is hope… I posted here many months ago when we were deperate, trying Intuniv and other drugs. My son turned 12 this year and we have actually reduced his meds and he is doing great. Intuniv was terrible for him, a kid who loves sports and is also hyperactive, can’t afford to miss sports or go sleepy on Intuniv. He was taking more and more Adderal XR, which doctors say made him irritable, so they added Intuniv. After he was so sleep, instead we cut out Intuniv, started reducing Adderal and we found the right balance. Each kid is unique, and changing fast, so stick with it and keep trying until you find what works.

I am sure Intuniv works for some kids just didn’t work in our situation with our particular kid.

Good luck all.
Comment by Barry — Sep 26th 2010 @ 4:49 pm
Hi, my son is 15 years old, has CP and issues with staying on task, some tics, some charateristics of autism, some hyperactivity. His major issue is that now that he is in highschool he is learning how to do “jobs” and has much difficulty staying on task and doing what he is supposed to do. We have tried the stimulants, they cause his BP and HR to go up to much, we are thinking about trying intuniv as we have a MD appt next week. Does anyone know how much more lethargic intuniv is to children than zoloft? He has been on zoloft for some of his tics, which we thought was OCD, but now think differently. Zoloft just seems to making him more anxious. His history is truamatic birth, cerebral infarct duing delivery, Cerebral palsy, moderate, so wondering if meds for the “brain” just work differently on him. Just wondering if anyone has any thoughts! Thanks
Comment by Jamie — Oct 8th 2010 @ 11:19 am
Jamie,
My son (15 years old) was put on Intuniv for his tics – He is on zoloft for his OCD, He had been on celexa and it made him crazy – I mean really scary crazy. Point is – there are a lot of SSRI’s and each person reacts differently to different ones. As for the Intuniv – we started low doses and then gradually increased. His magic number seems to be 3 mg. On 4 mg he is wiped out, it doesn’t seem to matter what time of day he takes it. He was just started on Strattera to help him with his focus (he has ADHD too, and the stimulants made his tourettes worse), the Intuniv wasn’t enough for focusing in class. That, too we tried at night because so many people say that it made their kids tired – he couldn’t sleep when we gave it at night – so again, everyone is different. Good luck!
Comment by Rebecca — Oct 10th 2010 @ 3:56 am
I’ve been reading through all of these posts – my 10 year old son just started taking Intuniv. This is his first medication, so I am a real newbie. He took his second dose this morning (1 mg). He has been very tired/sleepy – long naps both afternoons – very quiet. He said that he feels like it is from the medication – a bit of a drugged feeling. He didn’t want to eat dinner tonight – said he wasn’t hungry. I did finally get him to eat a small amount. I think I will wait to give him the medication tomorrow until dinner time – I want to see if that helps him feel less sleepy during the day. Please tell me this will go away. I’m so hopeful that this medication will help him.

The psychiatrist that evaluated him on Friday feels my son has some aspects of several things – depression, anxiety, ADHD, and bipolar, but not enough of any of them to make a diagnosis. He is a very sweet, smart, creative kid who actually gets very good grades at school and is in a gifted program. His teachers can’t believe he has behavior issues. What we see at home is rapid mood changes, rage, unpredictability, easily overwhelmed, over critical of himself. His behavior is disruptive to our family, which is why we sought help from a psychologist about a year ago. The psychologist felt we needed to consider medication along with continuing to work with him on behavior changes. The psychiatrist hopes the Intuniv will help with his rapid mood changes, impulse control, and attention.

Has anyone not seen the sleepiness improve over time? How long does it usually take to improve? What about the appetite issues? Thanks!
Comment by Deb H — Oct 11th 2010 @ 2:05 am
Wow, going to the docs Tuesday to see about Intuniv, not sure about it as it seems to make kids quite sleepy. I too am interested in if the sleepy feeling goes away. I’m thinking about asking the doc to start my son on wellbutrin for his ADD, he’s not so hyper. The stimulants don’t do good for him. I’m looking for a.magic pill that will help his attention but not change his personality. Is there one out there, that’s the million dollar question!!!
Comment by jamie — Oct 11th 2010 @ 2:42 am
Rebecca, have you ever head of trying wellbutrin for ADD? I just want something that won’t take his personality away! Thanks!
Comment by jamie — Oct 11th 2010 @ 2:46 am
Jamie, the right med will enhance their personality, not change it – if it changes who they are it isn’t the right med for your child. We have been through almost every ADHD med known to mankind in this house (except Wellbutrin)- all 3 of my boys have it and each one reacts to each med differently. My youngest is on adderal, conderta did nothing for him, my oldest couldn’t take adderal, concerta was great for him and so on. My middle son seems to have the greatest difficulty with meds and fine tuning – but he also has multiple problems – including OCD, TS and LD’s. When we saw increase moodiness, sadness, whatever – we moved on and tried another.
Deb – are you seeing a child psychiatrist? And have you gotten a 2nd opinion? Is he showing the same behaviors at school as at home? With our boys we found the behavior could be worse when they got home because they released all their anxiety and stress from the day. My middle son (mentioned above) would try so hard to “hold” his tourettes in that he would squeak for hours after school. He was on tenex for his TS and then we changed to the Intuniv once it came out. It is a med that your body adjusts to, so the fatigue should get better, if it doesn’t ask about tenex. It is the same med but short acting – unfortunately.
I think a second opinion is always valuable – the above mentioned son was diagnosed as bipolar by one psychiatrist (non pediatric) when he was taking celexa for his OCD. (we got him in to a first available because we were afraid he was suicidal) His sudden personality change was apparent to us and we were sure it was the med – we were able to get him in urgently to a child psychiatrist who immediately recognized it as an effect of the celexa, had him stop it, etc. She has been our Dr. for him ever since and I am so glad that we sought a second opinion.
I am so grateful for all of these people on this site – sometimes I think we all feel very alone – great group!
Comment by Rebecca — Oct 11th 2010 @ 5:18 am
Thanks Rebecca! We did see a child psychiatrist. It was very difficult to find one though. Most either weren’t taking new patients, did not accept our insurance, or had a 4 – 6 month wait. This doc was recommended to us by multiple sources. He spent nearly 2 hours with us at the initial appointment – I felt he was very thorough. I’m open to 2nd opinions, but I feel like we need to give this one a chance. We are still on a “list” for one of the docs with a long wait – I’ll leave it that way for now.

As for school, we are in a minority here – he does great at school. I do worry about him socially and how well he fits in with his peers. He doesn’t seem to have any close friends (no play dates, etc). His behavior is disruptive to our family. And, maybe even worse is that I can see him struggling with it. He does not like feeling bad – his fits of rage bother him, but he doesn’t seem to be able to control them. Also, he is very critical of himself and can be very self-loathing.

He had his 3rd dose of 1 mg of Intuniv this morning. He seemed less sleepy today – didn’t take a nap (it was a holiday here, so no school). He is quiet for him though. And tonight he was a little dizzy. I’m curious to see how he does with school tomorrow. I told him that we need to stick it out for a couple of weeks to see if his body adjusts. I’m not sure I want to go up to the 2 mg after just a week. I might see if we can get a prescription for the 1 mg and stick with that a bit longer until he adjusts better.
Comment by Deb H — Oct 12th 2010 @ 1:28 am
Doc appointment tomorrow, wish us luck! I really hope the doc can come up with something! I actually had a teacher tell me… do I want him to have a personality or do I want him to be successful with what he does? I am getting more angry every minute…my child can have BOTH!
Comment by jamie — Oct 12th 2010 @ 1:51 am
Hang in there Jamie and Deb – it is a long road but little steps and small accomplishments mean the world to us – things others take for granted.
Have you heard of the books by Dr. Amen? There is a good one called “How to heal ADHD” A bit misleading of a title but the best book I have read yet – that and “Children in the Syndrome Mix”. My middle son had a lot of problems with friends and peers as he was always “different” but related well to adults. He is 15 now and has 2 friends – good friends – I am so happy for him! My youngest son struggles with temper control and meltdowns and feels terrible and so embarrassed after it happens. He has 1 friend. I also have a friend whose daughter has Asperger’s and she is in college and now is finally finding a group to fit in with. Sometimes I think we just have to hold them up until they get into a kinder world and the world of grade school and middle school is anything but kind.
And for a laugh – I had a school psychologist tell me about my wild son – “we are just asking him to sit still – it’s not rocket science.” sometimes the schools are the least informed…..
Good Luck!
Comment by Rebecca — Oct 12th 2010 @ 5:48 am
I’ve got a 10yo son. He’s been diagnosed with ADHD Inattentive type, Asperger’s, and Dysgraphia.

Last year he was on Concerta, Methylin, Guanfacine, and 2 more pills. We successfully got him off of everything and had a summer with no pills.

Just before school started, we put him on Intuniv…. 1mg week 1, 2mg week 2, 3mg from then on. We give it to him at bed time.

He’s notorious for not sleeping until he physically cannot stay awake and then crashes. He usually winds up getting sick from this.

He also picked his skin badly when on the other meds… to the point he has scarring on his arms and his fingers would bleed. Poor guy.

For the past 2 weeks, he’s been refusing to do anything in school and fallen asleep in class a couple of times.

This week, he’s becoming aggressive and is rude and belligerent towards his teachers and other students.

He’s in the 5th grade. From reading this site, I’m beginning to think that it’s the Intinuv.
Comment by scorpion12 — Oct 12th 2010 @ 8:21 pm
@Scorpian12,

It very well could be. I just took my son off of it. He’s been on it for 6 weeks with no improvement. Up to 3mg a night. He was being aggressive, not completing assignments at school and sleeping through most of his afternoon. His Neurologist just took him off and we are starting on Concerta.

All kids are different. It’s a trial and error to find the right meds. Hang in there! I know it’s hard to watch them go through it. But, once the right med/dosage is found it’s amazing.
Comment by Renee — Oct 12th 2010 @ 8:25 pm
So, we talked the doctor…the way we see it is my son is so nervous that he just can’t concentrate on anything nd clamps down and can’t.concentration on anything when put on the spot. I took a video of my child and showed it to the doctor. my son does a lot of self soothing gestures. he had a stroke in delivery and has some gestures of an autistic child, getting worse when nervous or bored. oh good grief, I don’t know, but he is starting paxil tonight, just wish us luck, no negatives! We go back to the docs on two weeks. My hope is if he is less nervous he will do what he is supposed to do! He only weighs 113lbs and is 5’10…he can’t do stimulants! He would lose too much weight! And they could make him more nervous. he doesn’t talk, so this is all just on how he looks to me, which just complicates things! Thanks!!!
Comment by jamie — Oct 12th 2010 @ 8:25 pm
Agreed, all kids are differant. My son, 12 has been on intuniv for a full year now @ 3 mg..along with concerta.
He was put on the intuniv for aggression and along with the concerta is able to focus and get along with his peers…It has helped us tremendously !!!!! He also takes Prozac for OCD. I do remember that we had to increase the dose and give it time for the side effects to ware off. He is never sleepy anymore during school and he takes his dose first thing in the AM, he also picks the skin around his fingers…but hey, (gotta outway the good and bad). We just had a check up yesterday with our physiatrist and everything is looking so possitive for once…He is happy and even has joined the Jr.High Band/ Saxaphone ! I just hope it lasts :/ (fingers crossed)
just wanted to give a possitive about intuniv, good luck to all
kathy
Comment by Kathy — Oct 12th 2010 @ 8:42 pm
My son has been on 2mg of Intuvniv for about 6 weeks now. He’s also on 2mg of Risperidone for nervous TIC’s. Has anyone noticed a lot of weight gain with Intuniv? He has put on 6 pounds in the 6 weeks of Intuniv. Maybe it’s just the combination of Risperidone and Intuniv. I know Risperidone causes weight gain, but we didn’t notice the rapid weight gain until we added Intuniv.
Comment by Heidi Gundersen — Oct 12th 2010 @ 9:13 pm
I know I’m not looking forward to my son restarting Concerta. He did fine with it and did well in school but he developed picking behavior… he’d scratch his skin until it bled… I don’t want to go through that again but if the choice is picking or failing, I’ll choose picking.

My son’s been on 3mg Intuniv for a couple of months now and has not had noticable weight gain… he’s gaining slowly like 1/2 to 1 pound every 2 months or so…
Comment by scorpion12 — Oct 13th 2010 @ 3:45 pm
My son is on guanfacine, 1 mg 3 times a day, for tics. He was on Vyvanse 50mg and doing really well when he developed the tic and we took him off that and started him on Methylin ER and the Guanfacine. He was doing well for a while but I feel like the meds are no longer working. He has gained 15 pounds in the last 7 months since going on these two meds which seriously concerns me because he eats healthy. With the change in his behavior we are putting him BACK on the Vyvanse along with the Guanfacine and hoping that the meds will work together and he’ll still have the affects on his behavior that he had so well with Vyvanse but that the Guanfacine will keep the tics at bay. I’ll be curious to see if he starts losing weight again with the switch – if he doesn’t then I will deduce that it is the Guanfacine causing the weight issue. He is 9 1/2, 53 inches tall and weighs 88 pounds – he only weighed 73 pounds 7 months ago! And, he does Kung Fu every single day for exercise so….it’s gotta be the meds….thoughts?
Comment by Laura P — Oct 13th 2010 @ 3:50 pm
My son has been on either guanfecine or Intuniv for about 3 years now for his tics. He was taken off the stimulants because he wasn’t gaining weight! Intuniv was initially out as treatment for tics – I don’t know that it is a perfect answer as a stand alone drug for ADHD. Now that we have his tourettes under control we are starting strattera – and this week has been a definite improvement – without any increase in tics or sleep problems. Sometimes I think we all are looking for the magic pill that will “fix” everything. Sigh – I know I used to. A positive to note – my oldest went off his stims. this summer and is doing his whole senior year at a local college. He is doing well personally and his grades aren’t the best but pretty darn good for a good for a kid who had been on meds since kindergarten. There is a light!
Comment by Rebecca — Oct 13th 2010 @ 4:49 pm
Heidi,
Have you looked up the risperidone? I believe that med causes weight gain – check it out. One Dr. had put our son on it and when we got a second opinion he was taken off it and the guanfecine/intuniv was used to control his tics.
Comment by Rebecca — Oct 13th 2010 @ 4:57 pm
So paxil 20ng for three nights, doctors today with tremors, dizziness, and anxiety. So we are stopping the paxil for one week and then restarting it at a lower dose. It did help his anxiety and word hand gestures and OCD tendency, but OMG, he was seeing double! Not sure at this point if all the negatives are woth the outcome. I actually wonder if SSRI’s are a good path to follow! I will do what the doc says to do, but bot feeling like paxil at a lower dose will not do the same thing to him, good thing iove my child’s doctor!!!
Comment by jamie — Oct 15th 2010 @ 11:04 pm
Jamie, – paxil is a very old drug – there are a lot of newer SSRI’s that have fewer side effects and are more receptor specific. Zoloft, lexapro and celexa are all used for antianxiety – (which fuels the OCD). I agree – if those side effects were there, I’d be hesitant to give it another try. I think it is worth a conversation about different SSRI’s and giving them a try. Two of my boys were on celexa ( a generic form). One it was great for the other got the scary crazy – he was switched to zoloft (again a generic form) and it has been great at helping his OCD – without any side effects!
Comment by Rebecca — Oct 16th 2010 @ 2:04 am
Rebecca, we have tried zoloft and prozac. Soft didn’t work, prozac made him crazy. He didn’t have any filter at all on prozac. He did some major word things on prozac. Zoloft didn’t work, made him more nervous in higher doses, did nothing in low doses, but didn’t work. The paxil seems to work, but hopefully the lower dose will help Ruth no bad effects. My doctor is so thinking that he mY have not had enough time for the zoloft to get out of his system before we startedthe paxil, hence one reason we are waiting week to start over at lower dose. I don’t have a lot of hope for the paxil, but it may be worth the try again! At least if we try it again and it doesn’t work I will know!!! So, o.e more week of nothing and then we will see! I still wonder about welbutrin. Have you ever tried wellbutrin for anxiety or some OCD symptoms?
Comment by jamie — Oct 16th 2010 @ 2:20 am
Oh my Jamie – you have certainly been through the mill. No we have never tried Wellbutrin. My understanding is that it works more as a stimulant would. I have adult friends who had been on it and had increased anxiety. I truly feel your pain and will say a prayer and send positive thoughts your way. Please let me know how it goes for you – we all have to hang in there together. A parent without these challenging kids has no idea what it is like. And a challenging child has a parent that loves them so much they walk through fire for them – daily! Hang in there!
Comment by Rebecca — Oct 16th 2010 @ 3:21 am
My son started taking Concerta 36 mg when he was 7 for ADD. Over a couple of 6 weeks his teacher still thought he was having a lot of trouble concentrating so the doctor put him on 56mg about 6 months later. He did fine at first then we started noticing that he seemed really depressed and zombified and looked like a skeleton due to lack of appetite. I felt like he had lost his personality all together. It made me so sad for him but his teacher said he was doing great in school. But toward the end of the school year he started developing tics. This was extremely hard for my husband and I to watch. We couldn’t wait to get him off the stimulant. So when he got out for summer break the doctor suggested we try Intuniv. My son is now 8 years old and has been taking Intuniv for about 4 months now. He started a month before school started and I kept him on the 2mg for 3 weeks before changing to the 3 mg. He experienced sleepiness the first week of being on the 2mg but then was fine until we started the 3 mg. But the 2mg just wasn’t quite giving him the control he needed to stay focused. We were giving him his med in the morning right before school and he was falling asleep in class several times a day. So we started giving it to him right after school and this has alleviated the sleepiness at school. He sometimes falls asleep on the way to soccer practice but has had no problems falling asleep at bedtime. He sleeps all night and is easy to wake up in the morning for school. However, forget about sleeping in on the weekends cause he’s up no later than 6:30am every morning! It has helped his ADD a lot but not as well as the Concerta did. But I will take sleepiness over tics and a zombie skeleton child any day! He got his fun personality back and started socializing a lot more. He has an appetite now and has put on some healthy weight. He does well in school except for the afternoons he is having a hard time concentrating in math which has never been a problem before now. He is smart and in Talented and Gifted so I’m thinking it is just around the time the meds are wearing off and he may be a little tired, too. I am thinking of going to the Health food store and looking for a good vitamin or snack for him to take/eat right after lunch to try and put some pep in his step to be able to finish the day. Anyone have any suggestions?
I wanted to point out that my oldest, now 14, took Concerta for many years and did fine. Last school year he was having a bit of trouble staying focused, so we decided to try Vyvance per our pediatrician. And man what a difference it made. With the Concerta he hardly ate and seemed like he hadn’t grown much at all over the last few years. As soon as we switched to Vyvance he had a huge growth spurt and put on weight which was much needed. I know part of it was just timing and his age but he is still growing like a weed and eating me out of house and home. I feel like the Concerta was stunting his growth. They are both different one with ADD and one with ADHD and the meds affected them both differently. I think were on the right path now though!
Comment by Christie — Oct 20th 2010 @ 7:16 pm
Christie, we are starting week 3 with the Strattera added in with the Intuniv (which we have been on for 1 1/2 years). We are so pleased! We tried it at night because so many people said it made their kids sleepy – that lasted 2 nights. He now takes it in the AM. No appetite changes,no tics (and he has tourettes) no personality changes, sleeping at night, AND doing better at focusing at school. We had tried it when he was 8 and tried tapering him off his Concerta but it didn’t work – I’m thinking this time it is the combo with the Intuniv that is making it possible.
My oldest had been switched to Vyvanse with a dramatic difference. He was maxed out on the Concerta dose and was very anxious AND couldn’t focus. The Vyvanse worked wonders for him and he too started growing and putting on weight.
Comment by Rebecca — Oct 20th 2010 @ 8:25 pm
Well, last Friday my son saw his doc… turns out that I misunderstood the directions and he was only on intuniv. He was supposed to be on Concerta too…

He’s now on stratera and intuniv… minimal dosage for Stratera for now and working up for a month to see what happens and lowering the intuniv to either minimal dosage or remove it completely. Teacher’s say he’s doing better in school but not as well as he’s capable of… so there’s still a ways to go.
Comment by scorpion12 — Oct 20th 2010 @ 8:35 pm
Teachers seem to always say that stuff. Some days the planets align and an ADD/ADHD kid will have a great day. An LD kid will understand something. Unfortunately the teachers then take that as “their ability”.That is one of the mystifying things about this spectrum of issues. What is it that make those fabulous days? Unfortunately many teachers don’t realize that those days are the exception, not the rule.
Comment by Rebecca — Oct 20th 2010 @ 10:53 pm
Is this site only for boys? My 10yr old daughter has Asperger’s with comorbid symptoms of ODD and ADHD. We tried Strattera, pulled her off in 1 week after she began negative self talk and irritability; we tried Concerta and pulled her off before 1 month after she was soooo melancoly and not herself. Keep in mind every child is different. We have the benefit of a really good neuro developmental pediatrician (Mary Megson, 2 hrs away) who did a battery of tests, giving hard evidence of what was going on in her body (ie, yeast overgrowth, metals toxicity, low levels of minerals, etc). We took her off casien (milk) and followed a bionutritional protocol such as enzymes, good vitamin & mineral supplement, Cod Liver Oil (not A palmitate) for behavior, antifungal for yeast, then Candex to keep GI clean and Saccromyces Boullardi for probiotic, oxytocin for focus, b12 for attention, glutithione for metals cheleating. Finances changed and we coudn’t afford to keep up the cost. So when it all ran out we kept only what we could buy at a vitamin store: Cod liver oil, candex, saccromyces boullardi, and vitamin supplement. However, a few months ago, dd displayed outragous episodes of oppositional, rigid behavior. It was over the top. We went back to her Dr. Megson, who diagnosed PANDAS, a pediatric autommune disorder that amplifies OCD behavior after strep. Asked if she had strep recently — she had. What was suprising is that she displayed no symptoms. We had her swabbed for yeast at her local, traditional ped’trn, who said she tested positive for strep (we weren’t even looking for that). We began the treatment for both yeast and PANDAS this weekend. Meanwhile, she put my daughter on Intuniv for attention and impulsivity. We did 1mg for 1 week, then upped her to 2mg. By 2mg she complained of stomach aches and presents as VERY VERY sleepy. We definately do not want to go up to 3mg. Her teacher commented that her attention has improved. I believe hydration is a major key to why these guys get stomach aches. We have to force her to drink water. Originally we wanted to try Clonidine. Anyone try that for ODD?
Comment by Donna S. — Oct 22nd 2010 @ 7:18 pm
No it’s not just for boys. It just happens to be that we all have boys! My son took Clonidine for sleeping issues – it is definitely a med that makes them very sleepy. It was initially created as an anti-hypertensive medication but the side effects of excessive sleepiness prohibits most people from using it at the doses they need to control their BP. It can also have a rebound effect if not tapered. It did make him sleep at night though – that’s for sure! He just takes melatonin now.
How are they treating the Pandas and how did they check for the metals etc? My neighbor has been taking her son to someone who said he had arsenic issues but never did any lab work/hair samples, etc.
Comment by Rebecca — Oct 23rd 2010 @ 5:05 am
And did you really mean oxytocin? That is a pituitary hormone.
Comment by Rebecca — Oct 23rd 2010 @ 5:08 am
My son Daniel is 6 yrs old, but starting at age 3 I knew something was wrong with him. I couldnt quit figure out what it was though he wasnt hyper just loud and anxious. I had 2 other boys close to his age and he wsa different. At 5 in kindergarten he started having alot of problems with concentrating he got distracted easily and had melt downs. I discussed this with his doctor but she didnt really seem to listen. So I went to the local services for ppl with mental disabilities. They tested him for several things and came up with adhd. I said but he isnt bouncing off the walls or as they say “driven by a motor”. I found out then how little I knew about adhd, it isnt always hyper. Well this diagnosis got his doctors attention and she put him on vyvanse. He lost weight and became depressed on vyvanse so he was removed for the summer from meds and the doctor said well in august when he starts school come back if you still believe he needs medication. Well I waited it out to see what happened. From Aug-Oct. Daniel had 3 in-school suspensions for hitting other kids. Really random reasons why and he was very sorry afterwards but i just dont understand why. So I went back to doctor and he has been taking the 1 mg intuniv for 3 days. He seems tired, very tired, but after reading all the other posts I see that this might subside. It was nice to read that hydration plays a big part, will have to keep an eye on that. I have 4 kids now and Daniel is one of the middle children. Its been hard, I really dont want to have to try medical cocktails for him I just want something to curb some of the problems with the least side effects I hope the intuniv helps….
Comment by stephanie — Nov 11th 2010 @ 6:03 am
Stephanie – I can’t stress enough the importance of having a GOOD child psychiatrist involved in your child’s care. Kids like this are beyond the scope of a pediatrician. The hitting is from lack of impulse control. They really are sorry. There is an excellent book by Daniel Amen – “Healing ADD” – a bit of a misnomer of a title but very informative and the best book on ADHD that I ever read (and there were a lot). As you may have also gathered from all the postings – what works for one child doesn’t always work for another and what worked when they were 8 may not when they turn 12 etc. Hang in there and find a really good child psychiatrist as well as a local support group – it will make a world of difference.
Comment by Rebecca — Nov 12th 2010 @ 4:11 am
Deb H…..I don’t know if you are still checking this, since your post was in October, but I have a 9 year old son who sounds exactly like yours.

At school, he is a model child. All his teachers say he behaves wonderfully. He makes good grades and is in their academically gifted program. But he has a hard time making friends and is very quiet in social situations. His behavior at home is terrible, Like you said it is very disruptive to our family. I feel like he is angry and tense alot of the time and has angry outburts, especially towards his 12 year old brother. He is also very critical of himself.

I’m writing because your story was so extremely similar to mine and I didn’t know how to reach you personally. I want to know how the medicine is working out for you. Our child pysch told us to give it to him between supper and bedtime. We do and he goes right to sleep at bedtime with no problem. Then about an hour or two later he sleep walks. He walks through the house crying and saying “I’m scared”. I can walk him back to bed and tuck him in and he goes right back to sleep, but this happens every single night. This is on 3mg.

Are you still using Intuniv and has it helped with the behavior problems? My son seems better, but still has alot of the same problems, just not as often.
Comment by KayDee — Dec 2nd 2010 @ 5:15 pm
Hi, I’m the Christie from last May, not October (just saw another name same as mine). I haven’t been on here since. My son has been on 2mg Intuniv and 54mg Concerta since summer. He started the Intuniv in March I think. He had headaches on 3mg even after taking a few weeks, so went down to 2mg. Originally we got this for tics. His tics are still here, and now for the first time he has vocal tics in the form of cuss words. His tic changes from month to month. I think he may have Tourette’s (mildly) and possibly now Coprolalia, which is the cuss words. I don’t know enough about it. But he seems to only have one tic at a time, so not sure. I think I read that Tourette’s has to have more than one tic at a time. His have ranged from sniffing, finger movement, eye twiches, mouth movements, neck twitches, sniffing things (he has pretty much always done this one) like his fingers or any other objects, clearing throat. Trying to find psychiatrist. His neurologist quit last May, so haven’t had anyone but pediatrician since then, and she just referred me back to the same neurology place where he went, but they told me after reviewing all his notes, he needed a phychiatrist. Wish me luck. I don’t think the Intuniv really helped except made him a little more in control of himself in the mornings, now that is no longer true it seems. It never made him sleepy either, still has to take Clonodine every night to go to sleep. He is out of school from Dec 22 to mid-end of January (year round school here), so hopefully will get to psychiatrist and can try different meds during time school’s out.
Comment by Christie from May — Dec 2nd 2010 @ 6:26 pm
Intuniv — I haven’t posted since my first email back in October. (see my email Oct 22). Here’s an update. We moved from the 1mg Intuniv at night to the 2mg at night. This was awful. She was like a zombie walking around. I didn’t even finish out the week. We pulled her off it altogether. We spoke with her doctor and switched her back to 1mg. At the same time, we continued treating her with an antifungal for her yeast overgrowth. We’ve had her on the 1mg for nearly 1 month; however, have noticed that her irritability is still high, no outbursts but she cries alot, and is quicktempered. Over Thanksgiving, we decided to use the long break to pull her off the Intunive; about that same time she had finished all her antifungal medicine and began her probiotic. Happily, she is doing great. She is much less quicktempered and will take the time to listen through the explanation regarding a social situation or misbehavior. While her doctor is known for treating kids like my daughter biomedically (body- made products such as fish oil, minerals & supplements, enzymes and hormones), I recently found a protocol out of California that treats these kids’ challenges as medical conditions rather than developmental ones. It’s called NIDS protocol: Neuro-immune dysfunction syndrome. [www.nids.net] Suggesting, as our doctor had to us, that these kids are simply reacting to their bodies’ attack of itself (autoimmune). For instance in the May 1999 issue of The Journal of Pediatrics, a group of six
researchers concluded that “the presence of (brain autoantibodies) raises the possibility that autoimmuity plays a role in the pathogenesis of language and social development abnormalities in a subset of children (with autism and LKS)”. (J Pediatrics 1999; 134:607-613). This has merit. Every time we treat my daughter biomedically, get her yeast under control and keep her away from antibiotics, her behavior is significantly improved. I will be researching more about this. Hope this helps. -thecommunicationroom@msn.com. /Donna
Comment by Donna S. — Dec 2nd 2010 @ 7:49 pm
WOW Donna – thanks so much for the info – I will certainly look into that web site! I think almost anyone with kid issues is open to everything!
Comment by Rebecca — Dec 3rd 2010 @ 12:53 am
Hello All,

Have just come across this site and am amazed at all the wonderful comments. You parents are to be commended for your patience and endurance. I am a grandparent raising an 8 year old grandson with ADHD and several learning disabilities. He has been with us for 4 + years and it has truly been an education. He is my son’s son who also has ADHD that was never treated. Back in the late 70′s early 80′s when my son was growing up, ADHD was rarely diagnosed and totally misunderstood. My son began to self-medicate with alcohol and pot when he was in his teens. He began to get into trouble with the law and had to be removed from school because none of the teachers could handle him. He left home at the age of 16 and is now an active alcoholic. My son went to jail and I received custody of my grandson. I have learned so much about ADHD that I wish I knew years ago. I was totally resistant to giving my grandson medication and tried all kinds of natural remedies some of which helped a little. Nothing really worked, he was still bouncing off the walls, not sleeping, touching everything, not eating, crying a lot, not being able to read or learn, etc., I finally gave in to the medication and we tried most of the stimulants, to no avail. His doctor put him on Intuniv 1 mg and it made quite a difference, at first very sleepy, head on desk at school, but after a couple of months the sleepiness disappeared. The effect was starting to wear off so the doctor upped the dosage to 2 mg. This did not work, light headedness, emotional outbursts, etc, We are now going to add Wellbutrin, a stimulant antidepressant to the intuniv to see if that makes any difference. My grandson takes 1 mg of melatonin to get to sleep about an hour before bedtime. Has been on that for over three years, no side effects. I just want to say to all of you parents out there that I know first hand what happens when ADHD is left untreated, though not all cases will be as severe as my son. Giving medication is a tough decision, to be weighed carefully but once decided upon should be a relief and give some peace to the child and the parents. I have come across a wonderful book recently by a Dr. Daniel Amen, called “healing ADD”. Talks about the six kinds of ADD, great info for parents and teachers also. I highly recommend it. Well that’s my story. I wish you all well!
Comment by Julia — Dec 17th 2010 @ 2:29 am
Hi–Glad I found this site. My son is 9, primarily Hyperactive ADHD and has been very successful on the Daytrana patch for the past 4 years. We are trying Intuniv because 1.) He isn’t gaining weight at the rate he should be (hardly eats during the day) 2.) He started developing some tics off an on and 3.) The patch irritates his hip. So under the recommendtion of his developmental pediatrican, we decided to give it a go over Winter Break. We are currently on day 4 and here is how it is going so far. I am giving his 1 mg pill to him in the morning.

Day 1-No change, no side effects, bouncing off walls and VERY active (like his normal un-medicated self)

Day 2- Drowsiness started to set in around 6 p.m. Very drowsy, laid on couch until bedtime. He never does this.

Day 3- Zombie land. Laid on the couch ALL day, said he felt SOOO tired and funny. BUT ate a TON!

Day 4-Only about a few hours into the day, but so far the drowsiness has seemed to decrease just a little bit.

I really hope this drowsiness goes away soon. We are due to go up to 2 mg on Saturday, Christmas, but if he is still this drowsy by Friday, I don’t want to up the dose. I want the poor little guy to enjoy Christmas with the family and not be a zombie!

Some people have recommend giving the pill at night to reduce daytime drowsiness. I may consider that, even though his pediatrican told me that it is best to give it in the a.m. because the drowsiness actually hits about 12 hours later. Who knows? It seems the doctors have different information! I will keep everyone posted!
Comment by Melissa — Dec 21st 2010 @ 7:20 pm
HELLO!! My name is Linda and my son is 15 and is a freshmen in high school. He has been on Intuniv 3mg. Recently though after being om it a year his focus in school went downhill si it was increased to 4 mg but then he became exttemely anxious to the point where he is now on 10mg of prozac..also because he developed OCD recently too ,Hopefully the prozac will work however his intunidose is cut down to 2mg at this point..Has anyone had these expweiences? Does anyone have any advice for dealing with OCD at home or have had any sucessful meds for this? He is in therapy too but is extemelly shy he also has aspergers so tht makes the therapy slow going..also has anyone tried neurofeedback for anything? Thanks LINDA
Comment by Linda — Jan 2nd 2011 @ 3:34 am
Linda–My older son, 15, had ocd (was diagnosed at 12) He doesn’t take Intuniv (it is my younger 9 year old son that does) BUT my thought are that your son’s ocd is kicking up. It took us a long time to get my son’s under control. Also 1o mg of Prozac is a very low dose for treating ocd. Typically the effective range is 60 to 80 mg. We were able to control my son’s ocd with 25 mg and an AWESOME book/program–I HIGHLY recommend it. You can find it at Amazon, etc. and it is called “Talking Back to OCD” The Program That Helps Kids and Teens Say “No Way” — and Parents Say “Way to Go” I recommed you get a copy asap! Following this program, along with the medication put ocd into a very manageable level for my son!
Comment by Melissa — Jan 3rd 2011 @ 5:14 pm
Hi- my 11 year old son has started taking intuniv after trying adderall and focalin. He was diagnosed with ADHD at age 8. After trying various doses of the stimulants we found he just could not handle the side effects. Most disturbing was the extreme anxiety and feelings of despair. He’s now been on Intuniv for about 3 months and it’s the best of anything he’s taken. The biggest side effect is the sleepiness. Some days it was so bad that he went to the nurses office to take a quick nap. His eyes looked half open. We now send him to school with a Coke or Diet Coke. He keeps it in the classroom and drinks when he feels sleepy. We also give him the meds about an hour before bed which seems to help. I had some extra 2mg. so I was giving him that on the weekends and 3mg. during the week., but I found it only made the side effects worse when he went back on the 3. Dr. has suggested we just stay consistent. This stuff is not like the stimulants where you and go on and off easily.
anyway, bottom line for us…..Intuniv is the best of what we have tried.
Comment by Mary Beth — Jan 8th 2011 @ 6:25 pm
My middle son has ADHD as well as motor and vocal tics. Starting at age 6 (back in 2005), he began taking Concerta. The beneficial effect on his ADHD was very obvious at school & at home. However, the Concerta exacerbated his tics greatly, to an unacceptable level. So, we supplemented with Tenex (active ingredient guanfacine). The Tenex worked immediately and effective to truly eliminate his tics. However, he continued to have trouble with anxiety and sleep.

Despite his ADHD, when he is medicated and can focus, he performs very well at school, usually in the 98th or 99th percentile on standardized tests in math and reading.

Over the years, we increased his Concerta to 45 mg. Last year, at age 10, his anxieties and sleep issues worsened. And, behavior regulation was increasingly problematic. In June 2010, we tapered off of Concerta and transitioned to Intuniv. Now, he just turned 11, and has been taking 3 mg of Intuniv for 6+ months. This is his first school year with Intuniv.

In these past few weeks, after much reflection, my husband, my son, and I all concur that the Intuniv has been extremely helpful in reducing (if not eliminating) my son’s anxieties and sleep problems. And, his ability to regulate his behavior and be calm is at its best that it has been in years.

However, his level of distraction and inattention has grown and grown. It is now apparent that he drifts and zones at school, and is derailed by relatively minor distractions. Last month, on his first standardized test of the year, Lucas’ performance in math dropped to the 75th percentile — an over 20 point drop! He simply cannot stay on task or focus. He is very distressed that he does not seem to be able to concentrate and to prevent himself from being distracted.

Although his behavior in school is relatively fine, his level of inattention and distraction are simply not acceptable any longer, and he is feeling badly about himself in comparison to what he knows to be his cababilities.

So, we are now on the road to adding something else back into the mix — either Concerta (again) or perhaps Vyvanse (which we have never tried). The Intuniv is definitely so helpful for him in reducing anxieties, regulating behavior, reducing hyperactivity. But, the “focus” issue is simply not being helped.

Do folks have information or feedback on combining Intuniv with other medications?

NOTE: I rolled my eyes at many of the early posts being critical of medication for ADHD… My ADHD son is the “middle”. His challenges are so obvious in comparison to his two brothers. Likewise, his ability to perform, feel good about himself, and function at extremely high levels are completely obvious when he is medicated versus no medication…
Comment by Kimberly — Jan 12th 2011 @ 5:26 pm
@Melissa — Interested to hear if you stuck with the Intuniv. We definitely went through some very sleepy & lethargic patches at the beginning with Intuniv. I would caution that it helped significantly to increase slowly (1 mg for a week, then 2 mg for a week, then 3 mg). Also, Intuniv is not like Concerta and stim meds. Our observation, and what I’ve read, is that you definitely need 4-6 weeks to begin assessing efficacy. And, regarding sleepiness, with the extended release, the peak dose is 12 hours after dosage. However, I understand that it has a half-life of 17+ hours, so, once the body has fully acclimated to Intuniv after several weeks, the peaks & valleys should largely even out.

…But then again, we all know that every person’s body reacts differently do these meds!
Comment by Kimberly — Jan 12th 2011 @ 5:51 pm
@Melissa – how did you get your child to be motivated to address the OCD – I think my son like to have it as an excuse…..Also melatonin is natural – worked well for us.

@Kimberly – your son sound very much like mine (also the middle son). We added strattera this year – it has helped with the attention, hasn’t messed with sleep the way the stimulants did and no tics!!! The teachers didn’t know we had added it and all noticed a distinct difference, as we did as well. We had tried it in the past – without intuniv and it didn’t work well at all – must be the combination.
Comment by Rebecca — Jan 12th 2011 @ 7:11 pm
@Kimberly,
My son (12) Anxiety, Tics and ADHA took stimulants for years…added Intuniv begining last year because tics worsened and ending up adding Concerta back in last spring when he failed his taks test (always had been commended in the past)…He entered Jr. High this year and we are very pleased with the combination Seems to maintain behavior better along with focusing and keeping grades up as well….Good Luck !
Comment by Kathy — Jan 12th 2011 @ 7:16 pm
Kathy & Rebecca – Thank you so much for your comments. We are in the information-gathering stage, as we schedule another meds-consult with our son’s doctor, and experiences by kids similar in presentation is helpful. Will keep you posted.
Comment by Kimberly — Jan 12th 2011 @ 7:25 pm
@Kathy – If you don’t mind, curious what dosage your 12-yr old is taking for Intuniv & Concerta… Is he average weight for his age?
Comment by Kimberly — Jan 12th 2011 @ 7:34 pm
At Rebecca. My son (10) ADHD, anxiety, sleep problems, and tics, has been on Concerta, Intuniv, Clonodine, Sertraline for while. In December his tic changed to “f*ck, f*ck, f*ck” I freaked! He had to come home from school or go to another teachers class for most of the day.

I write to you because my doctor said not to mix Strattera with Intuniv, so took him off Intuniv to start Strattera (with Concerta and other drugs still included). Once Intuniv was stopped, but before Strattera started, his tics basically stopped, but once added Strattera, his tics came back, not the verbal one as much, but lots lots more tics.

It just made me wonder when you said you were giving that combination. Wierd. I think I will request Tenex for his tics.

I want to add this for everyone. My doctor tested my son Thursday for Lyme disease and strep. She said both of these have been linked to tics and even ADD. He came back positive for strep, and abnormal for Lyme disease. I couldn’t believe it. She is checking the abnormal result. She gave him antibiotics for 20 days. I will update what happens, but wanted you all to know this. If the antibiotics clear up his tics, I will do a back flip belly dance. Oh I can only pray, how wierd I had never heard of this.

After 2 weeks of Strattera, I have taken him off of it, he was up all hours of the night, even with his night-time medication. Don’t know the next step yet, will wait til his antibiotics round is over.
Comment by Christie from May — Jan 12th 2011 @ 8:28 pm
@Kimberly,
He is 120lbs/and 5’3, takes 54mg Concerta and 3 mg Intuniv and 5mg Prozac.
He used to be very underweight, once he started on the intuniv he did gain a little (I think he ate better bc he was not taking a stimulant at that time) and I would say 120 is a little on the heavier side..lol, but hey, Ill take happy over heavier anyday of the week
since back on the stimulant though, the weight has gone down a hair (not eating as much)…
Comment by Kathy — Jan 12th 2011 @ 9:54 pm
From my previous post, I meant “wierd” that one doc would mix the two, and another doc said not to. Not implying that YOU were wierd!!! It makes you wonder what they really know or care to mix.

My son is 10 and only weighs 60 lbs, (yes, he’s very underweight) he is taking 54mg Concerta, but has been on 72mg before, I think maybe he should go back up to that, but it seemed to make his anxiety worse and ate even LESS than he already does. The previous doc (behavioral neurologist) said it doesn’t really matter age/weight, it matters what dosage works. Said he has had kids on 108mg before successfully because that’s what they needed. I’m not claiming he’s right, that’s just what he said.
Comment by Christie from May — Jan 12th 2011 @ 10:14 pm
@Christine – LOL – I knew what you meant – no worries! We did the clonidine route for sleep, he is on Zoloft for OCD, and we did Tenex for tics but had a hard time with the 3x/day dosing – that’s why the Intuniv. Don’t know why your Dr. told you no to the strattera/intuniv combo. We see a child psychiatrist for his meds – can’t say enough good things about her – she is fabulous!
Comment by Rebecca — Jan 13th 2011 @ 12:06 am
We are going to a new child psych Jan 24. We have started just recently with a counseling group that comes to your home. There are 3 women. One working with my son, one mainly with me to support me (I’m single mom), and the other one is going to work with my daughter (7), but she has not started that yet, she’s only been here twice. They are going to be helpful for sure. My son and daughter fight so much it is driving me crazy, he is very disrespectful to me, and I have to get control. Right now he is totally out of control when he gets into one of his moods. I can’t stand him at these times, and I can’t stand to say that. The present psychologist thinks he may be bipolar, besides ADHD, and with right meds will be more stable. I’m glad we are seeing someone for another opinion soon. I don’t know what is wrong with him, but need to find out so we are not giving him medication for the wrong thing(s) and/or unnecessarily making things worse.

He is like Dr. Jekyl/Mr. Hyde (sp). I get so angry sometimes. Today he called me a b…, although all I did was make him go to his room twice in a row for screaming and fighting with his sister. I gave him the first good spanking he has had in a long time. That just pushed me too far. Then he said it again twice later and got spanked again both times. Then the therapists came and made me realize he was pushing my buttons now since he knows it hurts me/makes me angry so bad. I don’t know what I’ll do next time, because it really DOES make me angry, and just ignoring it (so it will “go away”) is not something I think I can do. And the spanking did not work, it made him even more angry. I know this has nothing to do with Intuniv, but I just had to vent. The psych thinks it’s bipolar because he has anger rages, and he said that is not characteristic of ADHD. UGH, hope we figure this out soon before I go crazy. My son also says he hates himself when he gets this way and that he can’t control it. He started calling himself a b…. (which was funny in its own way since he’s a boy).
Comment by Christie from May — Jan 13th 2011 @ 12:33 am
Hello MY son has adhd aspergers and also now has been recently diagnosed with anxiety disorder..He also has severe..We have him taking 20 mil of prozac,we are weaning him off Intuniv because it stiopped working for focus he will be put on something else soon. He also has times where he just stares for a few minutes like he is in a trance however no seizures have been found he has been tested.He also has time lately where if we are i na store lets say he has to stand in a spot in the aile foir at leat 3 minutes before he moves on,He is 15 years old a freshmen in high school very shy cant make friends..He is in therapy but it is a struggle.Has anyone had any of these experiences?
Comment by LINDA — Jan 19th 2011 @ 2:56 am
@Linda – Our son (age 11) has ADHD, and started taking Concerta just before he turned 6. We changed to Intuniv about 6 months ago, and phased out of Concerta (he was at 45 mg) because of increasing anxiety and sleep issues on his part. I’m glad we have given Intuniv (alone, 3mg) a very solid 6+ months to assess the impact. It is very clear to us that Intuniv has been better for our son in terms of overall behavior regulation, calmness, and anxiety reduction. And, of course, his sleep difficulties are completely gone. However, we are also sure that his distraction and inattention levels are getting virtually no help with Intuniv. With respect to distraction/inattention and focus, our son needs the Concerta. With that being said, we have decided to stay with Intuniv, and will be adding Concerta back into the mix. The question will be the mg that we end up with for Concerta. And, there is a possibility that we could try Vyvanse instead of Concerta. But, for now, we’re rotating Concerta back into his regimen. We are hopeful that we’ll re-capture the progress that we had seen previously with respect to focus. And, hopefully, we’ll still see the benefits of the Intuniv. We’ll keep you posted.
Comment by Kimberly — Jan 19th 2011 @ 4:52 am
Linda–
It sounds like he may have a little OCD mixed in if he feels that he needs to stand in place for a certain amount of time. They say that prozac can help with that, but you may want to check with your doctor. Good luck. My son also has ADHD and Tourette’s. He has no signs of OCD yet, but they are all closely related. I have OCD so i know how hard that can be.

Heidi
Comment by Heidi Gundersen — Jan 19th 2011 @ 4:43 pm
Hello,
My son was prescribed intuniv about 4 weeks ago and we can see a lot of improvements as far as not getting so angry and thinking things through and good reports from teachers. We are still struggling the best times to give it to him. If he takes it at night….he has a hard time being awake in the mornings and he is very irritable in the afternoons. If he takes it in the mornings he falls asleep in the class in the afternoons. He is 11 years old and has never been medicated before. Thanks for any comments!
Comment by susan — Jan 21st 2011 @ 9:57 pm
My son had his psych visit yesterday (first one with this doctor). She recommended putting him back on the Intuniv, and not only to raise it to 3mg (he had been on 2mg for months, 3 made him too sleepy to continue it), but to raise it to 4mg!! And also to raise his Sertraline to 100mg (been on 50mg-75mg). She wanted to phase out Clonodine for sleep and Concerta, but I said every time we’ve stopped Concerta, he was just way to hyper and impulsive for everyone’s sanity and safety. I hesitantly agreed to try again. When on 3mg, he just had such sleep issues that I cannot even imagine giving him 4mg. He is only 10 and weighs 60 lbs. She said give it at bedtime, I’ve tried both morning and night, and it doesn’t seem to matter. Does anyone else have experience with higher than 3mg??
Comment by Christie from May — Jan 25th 2011 @ 3:18 pm
I started him back on Intuniv 2mg Monday. On Tuesday, I noticed huge difference that I had forgotten about: I could trust him to get up before I got out of bed, without destroying something. I have been having to immediately jump up when I heard him running around, and give him his Concerta.

Then the next morning, (yesterday), I heard his verbal tic come back, which had gone away 95% when we weaned off Intuniv last month. Not the curse word tic, just little squeaks. Then after school, I noticed the curse word tic when he got frustrated with homework.

Then this morning, the curse word tic was back while just running around the house.

It is my belief that the Intuniv may be CAUSING this particular tic, not TREATING it. I googled this and found other comment boards where people say the same thing, they think Intuniv is CAUSING tics, strangely enough. Ugh, don’t know what to do, the benefits are not worth him running around ticcing curse word, and he can’t focus in school with this.

I am stopping Intuniv for few days and see if it disappears again. If so, I am almost convinced. The only other thing I have thought about was he started eating Lucky Charms again Monday night (bedtime snack), and every morning and snacktime this week. Hmmmmm. Doubt it’s that LOL, but you never know!
Comment by Christie from May — Jan 27th 2011 @ 4:26 pm
I jusr read the email ….from a dad….hello from a dad….. yes i also wonder if my sons Intuniv is causing tics…we are weaning him off it not sure what is next we definitely need something for the anxiety…my frind who is a nusrse also said if you read the intuniv pamplhlet it may not work for more than 9 weeks for some people.did anyone else have problems with Intuniv as far a tics? THANK YOU!
Comment by LINDA — Jan 29th 2011 @ 2:23 am
I read on a Tourette’s site, that tics are brought on by a change that the body is going through. I discussed with the doctor, and since he also started ticcing more when we started Strattera (which I immediately stopped), that the start of any new medication would probably cause the tics to increase. I did keep up the Intuniv, and his tics have lessened back to normal, so this makes sense. I am prepared now that when I increase the Intuniv, he will probably tic more for a period of time. I guess it depends on how long they last and how bad thay are as to whether or not I will continue to try the Intuniv at increased dosagvge.

Also, about the 9-week thing, my son was on Intuniv from March to December, mainly on 2mg (and now again). It seemed to work until November, but that was the time he went through a lot of issuues and stress with his Dad’s living situation/visitation, so that is what probably brought the negative behavior and tics, not sure. I read that the studies on Intuniv were only done for a period of 9 weeks, so maybe that’s where the nurse got that.

My neurologist actually told me last spring that since the studies were so short, that he was learning about it from his patients’ reactions and experiences. Gotta love an honest doctor!!!!
Comment by Christie from May — Jan 31st 2011 @ 4:18 pm
hi im 12 and i have adhd and autism i was wondering how much water do i have to drink cause i dont wanna be constipated (;P). I am taking medadate and intuniv at 6pm and im great, it works well. my old doctor didn’t allow us to get that drug so we switched and here i am! thanks!
Comment by Grace — Feb 1st 2011 @ 12:06 am
@Grace – my 10 year old son takes 2 mg of Intuniv. Although the sleepiness is sometimes a problem, the worst side effect for him has been constipation. We have solved it by adding a dose of Miralax daily. It is a powder that he mixes into a glass of juice – it dissolves. Check with your doctor first though. Lots of water, fresh fruits and vegetables might be enough too.
Comment by Deb H — Feb 1st 2011 @ 4:00 am
Also look for foods at grocery store that say High Fiber. If you like the flavored oatmeals, they provide good fiber. I’m glad you are doing so great!
Comment by Christie from May — Feb 1st 2011 @ 1:55 pm
Hi,

My son is 11. He’s been on meds for several years now. At first I was totally against it, but I came to the realization that if I wanted him to have a successful life, meds would have to be a part of his daily routine. We started him on concerta, with no luck. Then we moved to adderall with a strattera chaser, that worked for a short while. All the while adjusting dosages. I’ll add that it took 3 years of fighting with the school board to assess him so we could at least have an idea of what we were dealing with.

We ended up taking him off the strattera, but keeping the adderall and adding melatonin and a meal supplement like boost or ensure to try to get him to gain some weight. After a while it became apparent that the adderall alone wasn’t enough, he had terrible mood swings, his assessment came back, finally, and the doc decided to try him on Prozac. It worked for a while, but then ceased. We took him off, that worked, then ceased. Then we put him back on intermittently, ever other day, and that worked, but you guessed it, it ceased.

He just went to the doc the other day and decided to take him off both the Prozac and adderall and try him on vyvanse. I’ll admit, it’s new and I’m a bit nervous. She said he’ll have to go back on the melatonin, more than likely, and if that doesn’t help his sleep we may have to look at other options like intuniv. From what I’ve read so far, intuniv almost sounds like a nighmare.

Does anyone have any experience with combining the vyvanse and the intuniv? Or even vyvanse and melatonin?

He’s a bright kid with a big heart – when the meds work. When they don’t, I genuinely fear for his safety. I want what’s best for him and want to see him succeed. Any suggestions or comments?

Thanks!
Comment by Janie — Feb 4th 2011 @ 5:58 am
@Janie – sounds like you have been through alot with your son. I can’t speak to the multiple medications and how they interact as my 10 year old son is only on Intuniv. I know from reading here and other places that Intuniv does not work for some kids (that can be said about all of these medications). Just wanted to add that we have had what I consider to be success with Intuniv. My son has some aspects of depression, anxiety, ADHD, and bipolar. He does not have enough of any one of those to make a diagnosis, but he was not functioning well in our family and sometimes at school. He was prescribed Intuniv with hope that it would work as a mood stabilizer – clearly that is not what it is meant for, but that is exactly how it has worked for us. He is not a candidate for Prozac or other anti-depressants because of his rapid mood changes and a family history of bipolar.

Intuniv has been perfect for him. He has been on it for about 4 months and he is a different child – so much happier and easier to deal with. During the week when he is busy with school and activities, he is fine. On days off if we are hanging around the house, he will often nap – not like him. My assumption is that it is caused by the Intuniv. He has also dealt with constipation. Otherwise, it is working well. He takes 2 mg at dinner-time. I just wanted to share a positive story of Intuniv. I know it won’t last – I’m sure we will have to adjust medications as puberty gets going…
Comment by Deb H — Feb 4th 2011 @ 12:10 pm
Just to let you know about my 6 year olds experince with intuniv and straterra. He started the intuniv about 9 months ago and it helped a little but when we would up the dosage he would have nightmares and was not sleeping and he would eat all the time. About 2 months ago we put him on 1mg of intuniv and 40mg of straterra. At first he was not sleeping well at all he would be up at 3 and 4 am every morning and that lasted about 2 1/2 weeks and that stopped. He was doing great at school but in the evening his mood swings were horrible. So last week we started 1mg of intuniv and 25mg of straterra in the am and 25mg more of straterra in the pm. It seems to be helping but we will see. Hopefully this will work because I don’t want to try anything else but these meds have really helped my son.
Comment by Lisa — Feb 7th 2011 @ 8:01 pm
Hi all, My daughter is 9.5 and we’ve gone through various permutations of medications over the last 2 years. She is now on Concerta 27 mg with a 1/2 tablet of Guanfacine plus 50 mg of Zoloft. Her anxiety seems to be heightened now that we went from Concerta 18 mg to 27 mg. So, we are going to try going back down to the 18 for a few days. What really should be happening is that we up the Concerta to 36 mg and then up the Guanfacine to help with the anxiety that the Concerta causes, but I’m so afraid she’ll get too lethargic (she was on Intuniv last year and couldn’t make it past 2 mg and was still VERY sleepy and unmotivated on the 1 mg). Does anyone have an idea about what a typical dosage of Concerta is for kids around 9 years old or is that too general of a question? I just wish there was a magic formula that told us what to increase and what to decrease. Trying to figure it out with all the other things they are going through, plus sleep, diet, exercise and homone changes makes it very hard to do this.
Comment by Jane — Feb 14th 2011 @ 8:00 pm
My son is 10, he was on 36, 54, and last year, he was on 72mg of Concerta. He is now on 54 for the past 8 months due to anxiety, and lots of other issues, but as far as Concerta goes (he is also on 3 other drugs), it depends on what your child needs and/or can handle. He is only 62 lbs. The 72mg was fine for him, but he just got too nervous/anxious all the time.
Comment by Christie from May — Feb 14th 2011 @ 8:16 pm
Our son is 12 and currantly takes 54mg (weighs 116lbs)
The max dose should not be greater than 0.9 mg per pound of body weight. He also takes Intuniv 3mg and Prozac 10mg….I think its more about weight than age?
Anyway we have been happy with concerta, we have been on again off again since our son was 7 and we always come back to it. Concerta can make them more anxious, so find the dose that is best for him/her..We have had a lot of improvment when adding the Intuniv. we also had sleep issues that went away after time..
good luck!
kathy
Comment by Kathy — Feb 14th 2011 @ 8:39 pm
My son also was on 50mg Sertraline (Zoloft) 54mg Concerta, and 2mg Intuniv. He needed Clonodine in order to sleep at night. His Zoloft was increased to 75 then 100mg over the past 2 months. We’ve tried upping the Intuniv over the Christmas/January/February twice (3mg and 4mg), both with terrible results, (neither of which were sleepiness). He got much more hyper going from 2 to 3, and more from 3 to 4, easily angered, tics increased exponentially (sp?).

For the next week, we will try to stay back on 2mg. If nothing improves, maybe it’s the Zoloft’s “fault”.

It’s a never-ending battle, it seems. I even cut out the Lucky Charms and artificial colors, as in Gatorade, blueberry waffles, candy, but that hasn’t seemed to make any difference at ALL, except that he craves candy and unhealthy food more now, and has pigged out on cookies and cupcakes RED in the icing, candy and other junk because of the Valentine’s Day!!! LOL.
Comment by Christie from May — Feb 14th 2011 @ 11:55 pm
It seems like there is a really fine balance with Intuniv/Guanfacine and that nothing more than 2 mg works. I’m wondering if our 1/2 of 1mg even does a thing. My daughter is also craving sugar all the time (this happens even when she isn’t on her medication). It thought that would subside when she went on a stimulant since I figured it was her body’s way of self-regulating the need for the stimulation. But she just keeps on craving it. We have to remove as much sugary stuff as possible from the house since she just can’t stop fixating on it (trying to sell girl scout cookies with the boxes pre-ordered and sitting in the garage has been an absolute nightmare!:))

It seems like once you add more than one medication, it’s really hard to see which one is causing the side effects (and hard to give the right drug credit if you do see any sort of improvement). Any advice on how to detect which one is doing what??

We’ve tried Adderall, Daytrana, Focalin, Strattera and now Concerta. I’m still trying to figure out the real reasons we kept say “this one isn’t working”. Maybe it’s just as good as it’s going to get and none of these will get you to much more than 50% improvement. It’s just so hard to know when to stop increasing it since they cost $180 a bottle and some take longer for the affects to take hold.

This is the hardest thing I’ve ever had to figure out and every day is an unknown. My heart just aches for my daughter – I just hope one day she will be able to look back and tell me that she thinks the medication actually helped her.
Comment by Jane — Feb 15th 2011 @ 12:55 am
I am just putting a copy of this email I sent tonight (with names changed), so people know that they are not the only ones going through difficult times. I have been emailing almost daily with the school, doctors, therapists, and they are all so supportive, but wonder, and imagine, that alot of you are going through things like this, would love to hear…..

“Sorry so long an email, but here is a snapshot of the past few hours (and not a too unusual occurance). Today has been another trying evening, one of the worst in awhile. Brad came home and immediately rode his go-cart, while I got Samantha bathed and ready to go to Dad’s for the night. He was wide open, I mean WIDE OPEN. Rush rush rush, hurry up, everything fast fast fast. Tic, tic, tic, hopping, hopping, hopping. Usually when we have our one-on-one night, things go great.

When S… left, I gave him dinner and told him he needed to SLOW DOWN, he was going to give himself a heart attack, or me. We felt his heartbeat, he said it’s beating like crazy. Then his pediatrician called, and she said that she had talked to the family who had the little boy with Lyme’s disease, and she told them about B… and how I couldn’t afford to take him to the Lyme’s specialist. She said the man had been emailing her that he wanted to help pay for B….. to be treated, because his little boy had responded so well to treatment. CAN YOU BELIEVE THAT!?!?!?!? Anyway, B…. is scheduled for Thursday at 4:30 to be retested for Lyme’s and also his thyroid retested again for the third time. They also have the test for pyroluria, which I had asked for in December, so he will get checked for all this at his pediatrician and see what comes back this time.

No med seems to work for his ADHD or tics. They do the opposite of what they are “supposed” to do. Tonight after dinner, when we sat down (that took some doing) to look at his math, he looked at it, and immediately freaked out and ran to the back of the house and locked himself in the bathroom with Tiger (who is the cat recouperating from being fixed yesterday). I told him to just read for now. I brought him his book to read and took his DS out of the bathroom, another freakout, of course. He came out and he was yelling, angry, cussing, calling me names.

He came out and got milk and a banana. I wouldn’t let him take the milk out of the kitchen. He was blowing bubbles in it, etc. annoying behavior, laughing because I stood there and watched him drink it all because I didn’t trust him to stay in the kitchen. I made him pick up his cars that he had put and left in the kitchen floor, and he had a freakout attack again, screaming that he wanted to play a game with them tomorrow. He picked them up and THREW them all into his room with a crash, and ran back to the bathroom, calling me jerk and being very disrespectful. I gave him a minute, and went back in the bathroom to talk. He calmed down, and is supposedly reading the book in the bathroom.

I don’t know what’s going on in his body or mind, it’s freaking me out. He refused to get in the shower. I am not going to fight with him tonight, it does nothing but make things worse. Discipline makes him worse. Taking things from him makes him worse. I’m afraid he will have a panic attack, or me, or break things and hurt himself.

I told him in the morning we will try to look at the math again (I doubt that will happen). As long as he’s doing what he wants, when he wants, and nobody tells him to do otherwise, he is fine and dandy. Life cannot go on like this. I can’t imagine what he is like in school, but thank God he’s in school, at least there he is more protected from himself, I guess because he would be embarrassed to freak out too bad there. I can’t seem to calm him down when he’s like this, and somehow I’m sure I make things worse. Thank goodness S…. was at least not here. She and B…. together are another story.

PLEASE, GOD, HELP US! I gave him his Clonodine along with 2mg Intuniv (I don’t know about this Intuniv anymore) and his Zoloft (I don’t know about this either anymore) at 6:15. The Clonodine is the only thing that does what it’s supposed to do usually…. let him sleep. Maybe he should just take Clonodine 1/2 dose in the morning, maybe that will slow him down. And forget all the rest. Just saying….. I wouldn’t do that without weaning, talking to doctors, etc.

I will keep you posted. Sorry so long, but thought it very important you saw the picture I saw today/night, so if anything like this happens at school, you know it’s not the first time.”
Comment by Christie from May — Feb 16th 2011 @ 2:30 am
@Christine – as I read your posting – even before I got to the part where you said he took zoloft – all I could think of was – this is how my son was on one of the SSRI’s we tried – it was like he was manic/depressive. Has anyone looked at changing that med?
Comment by Rebecca — Feb 16th 2011 @ 5:49 am
No, but one psychologist said he suspects he may be bipolar, but that it wouldn’t come “out” until puberty. I read that antidepressants given to bipolar people can make them worse. Thanks so much! I will check into this further!!!!
Comment by Christie from May — Feb 16th 2011 @ 2:08 pm
Christie – the psychiatrist we saw told us he was bipolar and added in more meds. He left him on the celexa he was taking because he said he was suicidal and we shouldn’t stop it – I asked about the side effects of SSRI’s and kids – he gave me the “what do you know” look. We found another child psychiatrist who immediately tapered him off all meds except his ADHD one that he had been on for several years (without personality changes). Then we “saw” who he was underneath – a great kid with lots of problems – including anxiety, tourettes and OCD.
Comment by Rebecca — Feb 16th 2011 @ 5:23 pm
After alot of thinking and researching and doctors, and after a long talk with my boyfriend earlier today, I think I’ve reached a decision to wean him off Zoloft and Intuniv by next week, and get him off everything by the time he goes back to his Dad’s in 2 1/2 weeks, because it can’t be ANY worse than what we are going through now. If he can’t focus or concentrate or sit still, SO WHAT. That’s the case now anyway, plus all this other crap. Start from scratch. It may be a rough period, may not, may need to keep him home from school if they can’t handle it. B-friend said he would come stay with us if I needed some sleep and son was up at night, and to help out. I agree that we will see the real boy, and what his real symptoms still are, without them being possible side effects from any of the drugs. WISH US LUCK! I will update.

One good thing the psychologist told me (and my EX!!) at our Monday appointment was that I was doing so much work that I was becoming a scientist myself and that my EX didn’t realize all the hard work I had been doing and that he was very impressed! Go me!!
Comment by Christie from May — Feb 16th 2011 @ 5:50 pm
You guys have been such a great help and support, I’m very lucky to have found this site!
Comment by Christie from May — Feb 16th 2011 @ 5:53 pm
Good luck! Have your tried melatonin for sleep? Give 1-3 mg about an hour or so before bed – it helped my guy! Hang in there! Has anyone though of us starting a support/chat site on MD junction?
Comment by Rebecca — Feb 16th 2011 @ 6:22 pm
I have some 3mg pills, I will use it once we get him off the Concerta, but it has not been enough while on all these drugs, I have experimented with it with inconsistent results, even gave him 2 pills (6 mg), then another 3mg at 2am, and he was still up til 5:30, so went back to the Clonodine for now.
Comment by Christie from May — Feb 16th 2011 @ 7:24 pm
We have a medication review appointment next week. AT THIS point being om 2mg of INTUNIV Im wondering if we whuold just stop drugs for a while..my son is 15 and after talking to his teacher today he is only focusing a liutlle not much alot of the focus drugs we have tried made him agitated..H
Comment by Linda — Feb 17th 2011 @ 3:06 am
My son started intuniv earlier this year. He could not wake up for school and if he did he would fall asleep in class. We tried different times of the day with no success.
My son has been on every medication has been in hospital for drug reactions. All the Ritian based meds made him very aggressive would he would come off it. 3pm watch out all hell would break lose! We are currently on Lamictal 50mg and intuniv 2mg seems ok its about 3weeks
he is driving and seems to be doing very well. My son has tried just about everything and its very difficult for us and for him. my son does say he hates the way the meds make him feel he is 16. He says he has no personality and always feel da. Good luck you are your sons best doctor always listen to what they say. Like I said its hard to see your son in the hospital because the meds made him go crazy. Listen to yourself but most of all your child. Do the research. Its been a tough ride and we can only hope we do the best for our kids.
do research
Comment by mary — Feb 28th 2011 @ 1:15 am
Son is off intuniv, and down to 25mg Zoloft. Friday morning he had an episode calling me cusswords, throwing things at my face. Aiming his nerf gun at me an shooting, screaming and crying, throwing every cuss word in the book out at me, then saying he had no control of himself. His ped is looking into admitting him to a pediatric ward to do a total workup on him. The neurologist would not agree to see him, saying he thinks its a total psych issue. I have given him 1/2 Clonodine in the morning with increased Concerta to 72mg (with psychiatrists approval) since Thursday. He is calm and fine during the time the medication is in his system, but when it’s not, look out!!! Like I have to walk on eggshells to prevent another freakout. I kindof wonder if he really can’t control it, that’s a little better than him treating me like this on purpose, because other times, he is sweet, lovable affectionate, remorseful, but I know it’s not split personality, because he remembers each “personality” and what he did. It’s just so Jeckyl Hyde it makes you wonder.
Comment by Christie from May — Feb 28th 2011 @ 3:49 pm
Good afternoon, I read through alot of these posts but didnt see if anyone experienced their child getting more violent on Intunive? My son (9) was moved to 3 mlg a week ago and he seems like his anger has increased. I read the last comment by Christie and my son is so much like that. He is being treated for Post Traumatic stress disorder. I will admit I tried every other option for the last 3 years before the medication. I am just not sure if its helping or making it worse at this point. I get at least a hour a day of fits. The Jekyl and Hide comment is exactly what I go through. Its exhausting as a parent and with another child in the house its scary to them also.
Comment by Linda — Mar 9th 2011 @ 7:57 pm
Linda–
My 8 year old son was on Intuniv for about 4 months and we had to take him off. I noticed more aggression and violence. He also gained an extreme amount of weight in a short time period and it made him have to pee every 5 minutes. Our doctor said that everyone reacts differently. We ended up putting him on small doses of Clonidine with a short acting stimulant. He was tired at first with the Clonidine, but his body adjusted and he doesn’t have the side effects like he did with Intuniv. It’s not perfect, but we’re working with it for now. I’m with you on the Jekyl and Hide thing. You never know who you are going to get sometimes. My son can be the sweetest boy ever and then the CHANGE. I’m also with you on the how hard it can be for other siblings. We have a 13 year old son and he really tries to help out, but he gets frustrated as well. My 8 year old, Jake, broke his computer last night during one of his fits. God Bless! You’re not in it alone!
Comment by Heidi Gundersen — Mar 9th 2011 @ 8:12 pm
Heidi,

Thank you.. I dont feel so alone in this now. I keep thinking no other child acts like this and wow what did I do wrong?? I have tried numerous parenting classes, love and empathy, rewards, consequences,.. but when he has a episode its like dealing with a drunk and nothing is calming him we try to contain him to his room so he dont destroy the home. His words are vicious and my other child is 17 and he makes her cry. I kept asking if a child could be bi-polar but they say no. When he is in he sweet personality I look at him and feel so guilty that he is on meds now but I havent seen that sweet boy much in the past couple of weeks. I mentioned the doctor and she wants to give it more time.. I am just worried someone will get hurt. Hes destroyed his bedroom door and broke a window by kicking it. Its shocking how far he goes. I feel bad for the other kids that witness all this. My daughter is 17 and she cant handle him to leave him alone with her at all. Never know when he might go off. Not sure how long I can hold out hoping this medicine will help. Thank you so much for commenting.. God Bless you too!
Comment by Linda — Mar 9th 2011 @ 8:37 pm
Linda–
The first thing that i had to realize after many feelings of guilt and frustration is that it isn’t anyone’s fault that this happened to my son – it’s just the way it is. I think after many years of hard times, I have made peace with that – not that i don’t have my moments. I have done lots of research on this and we have seen multiple “specialists”. I don’t believe it’s true that a child can’t be bi-polar, they are just now discovering that they can be. However, it’s a complicated issue. My son is ADHD with Tourette’s and has lots of aggression as well. For the longest time i thought he might be bi-polar, but i don’t know if i can truly categorize him that way. I think there are a lot of things going on with him and it’s very hard to pinpoint. We go through the same thing – we don’t ever leave him home alone with his older brother or even a babysitter. Jacob breaks things on a weekly basis – he goes through good periods and bad periods. It looks as if we are approaching a rough one now. I would give the Intuniv a little more time, but if it isn’t working for your son, try other combinations. My doctor at first told me there was no way that the Intuniv could cause my son’s aggression and other side effects, but the minute we took him off of it, I noticed a huge difference. He dropped 15 pounds within 6 weeks and the aggression got much better. He still gets aggressive, but it’s not as frequently as it was when he was on Intuniv. Everyone reacts differently to different meds and has different side effects. If something isn’t working, you are the best person to identify it! Always listen to your doctor, but question what they are telling you. I always do my own research. I wish the best for you and your family. I know it helps me to know that other people are going through similar issues and that i’m not alone.
Comment by Heidi Gundersen — Mar 9th 2011 @ 9:06 pm
Heidi, Wow We definately can relate! I didnt think I could take much more. I calle dhis doctor and she is going to ween him down on the intuniv. She wants to add a very small dose of risperdal at night time. Though I am not comfortable with risperadal at all I agreed. I dont think I am comfortable with any medication yet maybe my anxiety will ease when I see a improvement. I think we have a really great Doctor working with us so that is positive. I had a good night last night with my son so 1 out of 7 is always a welcomed blessing. Thank you again.. hope things get better with your son too. Its gotta be hard on these boys to feel so angry.
Comment by Linda — Mar 10th 2011 @ 6:32 pm
My son is on Risperdal as well. I was worried at first with this medication, but it has done very well for him. It helps a lot with aggression and anger. I agree, I appreciate the good days a lot. It’s hard watching my son go through this.
Comment by Heidi Gundersen — Mar 10th 2011 @ 6:50 pm
Well, son is checked in at psychiatric unit (at famous college nearby I won’t name). He was admitted Tuesday night. They took away his Concerta Wednesday and today, are only giving him Clonodine. I feel terrible, but this is going to be the best thing I could do for him to have everyone monitoring his behavior 24/7, and specialists to help him learn how to channel his anger more effectively, learn how to be polite or not get his way EVER. There is no music, TV only from 8-9pm, no outside play, structured activities most of day, school, occupational and recreational therapy, reflection. If you’re good all day, you can play Nintendo DS for 30 minutes or go in the playroom, or get a game, or get to play with a peer or therapist. How hard for him going from doing whatever he wanted whenever he wanted. He’s gone from totally unstructured to totally structured. I now need to be told exactly what kind of structure he needs and have him adjust to structure at home, without rebellion. And I and his sister will also have to change our lives, because we are not used to structure either with all the chaos that has been our lives for the past few months. I will update on this structure thing if it indeed works for my little Jeckyl Hyde.
Comment by Christie — Mar 10th 2011 @ 7:37 pm
That sounded funny… “this structure thing”. I know of course that children need structure. It’s just something I have tried to provide, but I can never keep it going. I’m a single mom, and there is always some appointment, or play date, or special TV program that day, or spontaneous activity, that totally gets in the way of making any sort of daily routine.
Comment by Christie — Mar 11th 2011 @ 4:49 pm
Hello, I was very excited to read this blog because, well I have so MANY questions! A lot of people here have struggled for so long and have had to educate themselves on so many treatments, diagnoses, and I have to admit to feeling intimidated. A am a brand new single (foster) mother to a very bright and sweet 12 y/o son who has come to me with three medications: Concerta (36 mg), Intuniv (4mg) and Lexapro (20 mg). He is on the medications for ADHD and anxiety as far as I am aware. He has a history of “meltdowns” in school, though non-violent and since he started with me I have had NO behavioral issues other than a normal 12 year old testing his limits (yes, you have to take a bath and yes, homework is mandatory and no, you don’t need a cell phone yet). Since he has come to stay with me (more or less permanently as parental rights are about to be severed after three years of foster care) he has been “brighter” and “happier” according to all his teachers and everyone concerned. However. He is sleeping through school. But only since coming to stay with me! I kept him on the same bedtime schedule as his previous home and he has 9 hours from bed time to alarm clock. He gets real food at a real schedule and limited snacks though he has been allowed some snacks since his behaviors have been good. He stays awake at home when doing something he wants to do (ie. read, draw, play, etc). He denies having trouble sleeping or staying asleep but I fear he’s only telling me what he thinks I want to hear despite my assurances. He does have a t.v. in his room, but he sleeps with the door open as do I and they are adjacent so I would most likely notice the lights even if the sound is down. My other thought is if he was not getting his medications delivered properly from the previous foster family, and there is no way to check on that. He just tells me they were “fine”. I guess my real question is with three real possible culprits for excessive sleepiness (Concerta, Lexapro, and Intuniv) I’m not sure where to look first! I do have a call into his psychiatrist MD, but this is all new to me and I feel very, very lost. Lost but determined. My son (yes, mine) is a good, smart boy and I know it’s naive, but if I can find the right balance of medicines I just know it will help! And yes, I have wondered if it’s him not being able to sleep as he adjusts …but he told his social worker that he was “happy” with me and the social worker nearly cried, saying it was the first time in 3 years he has heard that word from him. Not that I’m doing anything out of the ordinary, I just think the one on one attention in a home without an older brother picking on him; while being allowed to pursue his interests (art and reading) help the most ….
Comment by Nicole — Mar 17th 2011 @ 8:23 pm
Nicole,
Its sound like alot of medicine. My son is 16 now and we tried all those meds. He is back on intuniv 2mg and Limical 50mg. I did like lexapro but he broke out in a rash. The only side effect we had on intuniv it made him very tired and would fall asleep in class all the time. He was on 4mg so we reduced to 3mg then to 2mg. He is not tired as much. We also give him his meds at night try around 7pm and he sleeps fine. The intuniv should help with the ADHD so I’m not sure about the concerta, my son would not eat, sleep and would pick holes in his skin when he was on concerta. We like focalin better less side effects. Good Luck
Comment by mary — Mar 17th 2011 @ 9:45 pm
I have two children with Autistic Spectrum Disorder; my third also has a form of it. I’ve tried the drugs ~ been there, done that ~ and the fact of the matter is, NONE of them “works”. There is NO CURE; there is NO magical pill and if you have a child diagnosed with ASD, or ADD, or ADHD or any combination thereof, your child needs YOU ~ period.

Dietary adjustments work FAR more consistently and effectively; for example, when I removed ALL red and blue dyes, limited sugars and gluten, and made SURE he ate 5-6 smaller meals a day, MANY of his behavior issues went away. Only when the SCHOOL system I was in refused to accommodate his dietary needs, did problems arise again. Then again, when he went through puberty.

Look, fact is, this is NOT an “epidemic” and it’s NOT a “disease”; this generation of children have ALL been effected by the things we have done to our World. THE best and ONLY consistent way to deal with such blessed children, is to TAKE YOUR TIME with them. Make and KEEP a schedule; keep things SIMPLE and keep ALL things in their place.

If the school system you’re in can’t or WON’T accommodate you, then PULL YOUR CHILD OUT OF PUBLIC SCHOOL and do whatEVER it takes to socialize them other ways. Putting these children into “special” classes; removing them, because their behaviors are disruptive, etc and so forth, only FURTHER their problems.

My son (middle child with worse symptoms) is now 17, home schooled and carrying an A/B average. He is quite social and no longer screams for hours, or bangs his head on the walls, of talks consistently and constantly only about things which interest him.

THESE CHILDREN CAN HEAL ~ but you MUST take the TIME with them. You MUST give up the two household income if need be, so one parent is ALWAYS there and you MUST realize, the problem is in how the WORLD perceives them: there is NOTHING WRONG WITH THESE CHILDREN except they are the BRILLIANT ones the World has no time for anymore.

Medication, for tics? Ridiculous! One pill for this symptom then another for the side effects; then a third for the symptoms caused by the pills!! NONSENSE! Modern Medicine has NOT helped us; Just take a LOOK at all the ads for lawyers handling class action lawsuits.

TAKE YOUR TIME with your child: CHANGE THEIR DIET, stay HOME, down size your LIFE if need be…but STAY HOME WITH THEM and take your time!
Comment by KTerrones — Mar 22nd 2011 @ 2:44 am
@ Martine

To answer your question on WHY the label on Intuniv speaks about “heavy machinery” and “pregnancy” is the active ingredient is Guanfacine which is a drug that was released to treat high blood pressure! So, they are REQUIRED BY LAW to put the “warning” label on there directed toward the ACTIVE INGREDIENT!! Do your research before you throw stones! Oh, and until you live with a child that has ADHD, don’t judge! You’re not God, HE IS THE ONLY ONE THAT WILL JUDGE US! NOT YOU!!!
Comment by Mom of boys — Mar 26th 2011 @ 9:46 pm
Son is out of hospital for a week now. They took him off all meds (Concerta, Clonodine, Intuniv, Zoloft) and now is on .5mg Risperidone and 18mg Strattera. His tics are totally gone except for when he starts to get frustrated or stressed, and then only last for a few seconds if I catch him and try to help him relax. He also is not picking at himself (scabs, etc.). He has fallen asleep mid-day alot lately, but that’s side effects from both drugs. He is on a more strict schedule at home, which has been very helpful, and we made chart with green, yellow, and red behaviors. His sister and him are fighting less, but still fight as kids will. His anxiety has returned with him being afraid a bear is going to break through his window and eat him.

School is another subject as well. His school has no idea what to do with him. We have IEP meeting this week. They sent him to office twice today to let him sleep.
Comment by Christie — Mar 28th 2011 @ 7:31 pm
Christie – hang in there – I think we all feel your pain. My son has started making huge strides. Have you heard of “brain based therapy”? (Have I asked you this before?) We have neighbors who have employed it with 2 of their children with great success. We were looking at it and then we started having progress with behavior training (fortunately) with the change in timing of meds. We are having him take his intuniv at school at lunch and have had sleepiness issues basically go away. He does come home sleepy when he has had a hard day at school – and has to crash. I think he works so hard at staying focused and on task and not squeaking on hard days that he comes home just beat!
Keep us posted and good luck. Is anyone interested in starting a chat site on MD junction or Yahoo? Any idea how – with discussion threads etc?
Comment by Rebecca — Mar 29th 2011 @ 12:00 am
Intunive not only treats ADHD, but stress related problems with focus, feelings and behavior. As the person gets better and the stress goes down, it is almost always necessary to reduce the Intuniv– it is very reliable at making one sluggish if he is taking more than is needed. If taking both Intuniv and something else that might be causing tiredness/sluggishness/sleepiness, (like Lexapro, another excellent medicine) cut down the other one first and see how that works, because Intuniv (and clonidine) treats the underlyin stress problem that may cause or worsen the anxiety, depression, conduct problems, etc., so he might be able to get off of all of the other medicines for mood problems first before reducing Intuniv. Reducing the stimulants is usually not necessary.
Comment by Jim — Apr 6th 2011 @ 12:38 am
I have been reading through everyones posts about their concerns and their families. I feel so much like you guys and am happy to know that people out there feel kindof like me when trying my child on a new medication for his ADHD and his OCD also, I feel like I am lab testing him and I don’t know what the future is going to hold for him. He is now going to be 15 and been on several different medications do control his ADHD and other behaviors. We just added Intuniv to his daily intake and I have some worries on what could happen, will it help or hurt him. But after reading some of these posts I do feel alittle better.
Comment by Heather — Apr 24th 2011 @ 11:15 pm
I have been reading through everyones posts about their concerns and their families. I feel so much like you guys and am happy to know that people out there feel kindof like me when trying my child on a new medication for his ADHD and his OCD also, I feel like I am lab testing him and I don’t know what the future is going to hold for him. He is now going to be 15 and been on several different medications to control his ADHD and other behaviors. We just added Intuniv to his daily intake and I have some worries on what could happen, will it help or hurt him. But after reading some of these posts I do feel alittle better.
Comment by Heather — Apr 24th 2011 @ 11:15 pm
What a relief to find this site! thank you all! My question is pretty simple (at this time). My 10 year old son with newly diagnosed ADHD is currently at 3 mg of INTUNIV and 50 mg of ZOLOFT. We had been giving the Intuniv at 5 pm without any response in sleep patterns, which had been one side effect/goal we were hoping for. he has never fallen asleep without assistance from some vitamin “M” (Melatonin 2.5 mg is the magic #). but the pedi wanted to see what would happen if we held off. 6 hours later… So I have gradually started moving the dosing times back with a goal of mornings before school start. yes, he is drowsy, but not zombie-fied. would anyone have any other suggestions? Thanks for your time and expertise.
Comment by sarah — Apr 30th 2011 @ 1:54 am
we started having our son take it at school at lunch time – the drowsiness timing seems to be better for bedtime but interestingly enough we don’t see any excessive daytime drowsiness anymore. Either he has gotten used to it OR we have the timing down just right for him.
Comment by Rebecca — Apr 30th 2011 @ 1:41 pm
Hi. I have a question in regards to intuniv. When is the best time of day to take it? I have been giving it at 8AM. He was on 3 mg but needed to go up to 4 mg because of impulse and inappropriate behaviors. However 4mg was too strong and after a month he was still sleeping everyday in class. What do you suggest? It is so hard to change when you give it. Should I try before bed? or afternoon 4 pm? Has anyone gave 2 mgs two times a day? Just wondering if I could give 2am and 2pm? Or has anyone cut them? Could I give 3mg in the afternoon and cut a 2 mh in half and give in the am? Just wondering since Dr.’s seem to think we should paly around with doses but it really does affect the kids in getting sleepy or irritable and is harder to do then they realize!
Comment by michele — May 2nd 2011 @ 11:07 pm
@Michele – check with your pharmacist/doctor, but I do not believe you should cut the Intuniv tablets. They are designed to be time-released and cutting them screws that up. If you think the medication is helping but you want to be able to control when and how much you give him and to be able to spread it over the day, you should talk to your doctor about a prescription for guanfacine – the active ingredient in Intuniv. The regular generic guanfacine is not time released and can be given in different doses more often. We give my son his Intuniv with dinner – seems to work best for him despite the literature recommending morning doses. Giving it to him in the morning just made him sleepy during the day and kept him up at night.
Comment by Deb H — May 3rd 2011 @ 1:19 am
Michele- what worked for us was figuring out when the sleepiness started in relation to when we gave the pill, and worked back from that. My son seemed to get sleepy about 3-4 hours after taking it – we worked out our dosage time from that. Over time it has changed – he now takes it at noon at school and is sleepy at bedtime. Good luck!
Comment by Rebecca — May 3rd 2011 @ 2:14 am
I’d like to hear from those of you who have either tried guanfacine or have their child on guanfacine currently. How has it been going? Our first psychiatrist had us cutting a 1mg pill in half (and adding it to her 27mg concerta and 25mg zoloft). But my pediatrician (who has a background in pharmacology) doesn’t feel comfortable with cutting it in half and recommended that we go up to 1mg. We are trying to get a handle on her impulsivity and her rage issues. She seems to fly off the handle at us for even the simplest request and always talks to us like we are idiots or like we are annoying the heck out of her (she’s only 9, not the “teenage” years yet – god help us!). We’re hoping this med helps with those behaviors. When we had her on intuniv last year, she was so sleepy, so couldn’t even function (even on the 1mg), so that is why we are trying guanfacine instead. Any comments about your experiences? Thx!
Comment by Jane — May 3rd 2011 @ 3:10 am
Our 12-year-old daughter has been taking inutniv for almost a year. She now takes it as soon as she gets out of school, about 3:30 pm. We did have problems with lethargy, sleepiness, and sadness, but these subsided once we cut the dose from 3 mg to 1 mg. She is now able to tolerate 2 mg with no ill side effects. She also takes Prozac and Focalin. We do not give it at lunch because of absorption issues. I understand that it should not be taken within 30 minutes of eating fatty foods. Good luck; this drug takes a lot of patience and adjustment, but we feel it has helped her impulsivity and demeanor.
Comment by jalynn — May 3rd 2011 @ 4:29 am
Jane,

I wonder if its a age thing sometimes.. my son is 9. We tried Intuniv, and by the time they got him to 3 mlg he was physically violent and was really tired. We were not allowed to change to the evening on it either. Now they have him on Concerta in the am and risperdal in the evening. I see no change at all.. I am so frustrated because he is so disrespectful, arguementive and just mean. First the doc said he had post trumatic stress disorder, then ODD… Not ADHD. I dont think anything is working at this point. I get maybe 5 minutes to speak with his therapist and when he goes there he is a angel, charming.. I cant even explain how bad it is in 5 minutes. He used to be such a joy to be around but the last 6 months he has progressed to where its exhausting. The only time he is enjoyable is if he gets his way or something he wants. As nasty as he is its hard to give him rewards (which the therapist suggests).. as soon as he gets what he wants then his behavior reverts back. I keep hoping its a phase but am trying to find ways to deal with it.. just seems lke medicine is not helping or havent got the right one yet.
Comment by Linda — May 3rd 2011 @ 12:05 pm
My son is 7 and has ADHA Anxiety Disorder and OCD. At 5 we started giving him meds and in no time he started having tics and was so mad and rude to people. We deided to take him off all meds and as long as he was doing well in school we could handle him. Well the past few months he has gotten so bad that we cant even take him to church because he cant sit still. He also has started voice tics and cannot stayed focused at all. His doctor suggested Intuniv and tonight was his first dose. I am scared to death he is going to be out of it tomorrow. I felt so bad when the last time we tried meds and he started grunting and growling and said he felt so mad. I gave it to him at 7:30 and I hope that was the right time. Im not sure why he has started the voice tics? Does anyone know if that can go along with ADHD?
Comment by Abby — May 4th 2011 @ 3:27 am
My son is 6 and has been on medication for ADD and ODD since May of last year. We started with Intuniv 1mg and tried to move up to 3mg but he was a zombie. So we started him on Strattera and 1mg of intuniv and that worked a while but his mood swings were horrible. He would be awesome in school but around 5pm the medication would wear off. About a month ago he started having rapid heart beat, profuse sweating and saying his chest was hurting every time he would play sports and get hot. So the dr. took him off Strattera and Intuniv and was going to try and see how he would do with no medication and we found out really quick how well the medication worked and helped him. So last week the Dr. put him on Vyvanse 30mg bc he is very active and I did not want something to happen to him while taking Strattera. We were trying everything to not have to put him on a stimulant but we had no other option that we knew of. The only thing we see is that when we give it to him around 7 or 7:15 am it starts wearing off around 7:45pm or 8 and in the mornings he his wired and it takes about 1hr to get back in his system. Can anyone help with this. Should we put him back on at least 1mg of intuniv. I don’t want him on too much but the nights and mornings are horrible. Also I may sound really stupid saying this but my son is such a kind hearted and loving kid. He has had no trouble at school (only when he was off his meds) and his teacher is wonderful. He has made honor roll and principle schloar but when he is at home he talks back, does anything to annoy me and my husband (especially me) just to see how frustrated we can get. He will say no to any request. Argue and say ugly stuff (thats stupid, sucks, I hate that, etc.). He also gets upset really easily and sometimes for what seems like no reason. My dad says we are inconsistent and should not let him act like that. He thinks we try to accommodate him so he won’t get upset. That is true to a point but we have tried to tell my dad that dealing with his temper tantrums and attitude is different than most kids. We find that getting mad and spanking him or fussing at him makes him worse so there are times we have to be gentle and sometimes compromise to calm him down and get him to listen to what we have to say. Are we doing the wrong thing or is this really something he can’t control. I feel like I am the problem because I am not disceplining enough or inconsistent. It seems so confusing because he does it at home and different places but is a complete angel with my parents, school, and some other places how is that possible that he can hold it together sometimes and not others. Is this a spoiled rotten kid or is this coming from the ADD and ODD. Any help would be greatly appreciated. I feel so alone and bad as a parent because I feel like this is my fault. Thanks
Comment by Lisa — May 4th 2011 @ 2:59 pm
Lisa, My son is 9 and we gave him Intuniv in the am and he slept all day in class. We switched meds completely but still no change in behavior. Like your son, mine is only mean towards me. I dont get it. I am not saying he is disrespectful over a couple things here and there its extream. He has destroyed things in our house and says awful things to me and wont stop. As soon as I get home from work it starts. He is angry towards me only. I try to do whatever I can for my kids but a single mom, so he tells me I do nothing for my kids, calls me a liar, that I cant tell him what to do, that I only care about myself, I never do anything with him, I care more about his sister, I do everything for her.. etc.. and usually over him wanting something. If I ask him to do something, simple and moving out of the way to open the fridge he will refuse tell me no if I threaten to take something away as punishment he will say “I dont care”. I keep thinking my parents whooped my bottom, they put soap in my mouth but I never disrespected them. The choices of consequences and rewards is all docs seem to suggest and nothing is working. He wants allowance for not doing anything.. if I ask him to take out trash he argues and refuses.. I will give him time to do it but do it myself (hour later) but then he starts yelling that I just dont want to pay him. Its exhausting because these episodes take up most of my morning and most of my evenings.. I am exhausted. Something is not right and I have not figured it out yet. Almost hopeless…
Comment by Linda — May 4th 2011 @ 4:16 pm
Hi Lisa,

Just read your comment and want to say that I sense a lot of guilt. Please be kind to yourself. Raising ADD children is a very tough job and very frustrating from day to day. I have raised two ADHD boys and am now raising a grandson with ADHD and Dyslexia. One has to pick the battles very carefully so that you can maintain your sanity. Discipline needs to be consistent and loving. It is important to discipline just like you would a normal child. You can not tolerate disrespect as it only gets worse as they get older. Pick a consequence and let you r child know what it will be and enforce consistently. Some of the oppositional behavior can be attributed to the ADHD but not all. Most kids know how to get their own way from an early age, they can manipulate and will do so if they know it works. ADHD kids need very firm boundaries and even if they seem not to like it, they really do. My grandson has been on Intuniv for over a year and we have not been able to give him more than 1 mg. It is no longer working and we will be looking for another solution. His doctor has suggested stimulant anti-depressants. We will try as all other meds so far have turned him into a basket case. He has also been diagnosed with a lot of food allergies. I am trying a more natural approach, hoping that will help. There is no magic bullett! Forgive yourself at the end of each day for whatever mistakes you think you made and start fresh the next morning, doing your very best to cope.
Comment by yuly — May 4th 2011 @ 5:05 pm
I have just found your great website! My 9 yr old daughter has been diagnosed with anxiety and, as of right now, borderline ADD, although her teacher’s feel she has neither. Her pediatrician and pychologist see it too and we especially see it here at home. I have ADD as does my older son. She now takes Celexa 10 mg per day for anxiety and we are about to begin Intuniv this weekend. I had seen an older post from a school teacher named Heather from May of 2010. I wish she would have done a follow-up, and wonder how her daughter is doing now. Unlike her daughter, mine does not have tics or pull out her hair, but she does have the same social difficulties. Her biggest problem is impulsitivity and seems to get overly excited with other people outside our immediate family. She is like two different personalities from being alone here with us, and as soon as someone else comes into contact, she becomes extremely silly and impulsive both verbally and physically. She is too overwhelming for children and they eventually begin to avoid her, but adults love her and her very outgoing spirit. She is very kind hearted and has a really sweet side. But, there is also another side which seems situational. She will begin Middle School in 2 years. She also has a lot of trouble focusing and staying on task, but somehow does ok with this in school. And her grades are not an issue. She is going to counseling with a specialist who also does group therapy with other children to teach social skills. We have just started this program, so I cannot give any feedback as of yet. Heather, if you see this, please let us know how your daughter is doing. This website and all of your comments and insight has really helped me before starting the Intuniv!! Thank You!
Comment by JoBeth — May 10th 2011 @ 4:17 pm
my son is 3 years old and just started 1/2 mg in the morning and 1/2 when we get home from work. his daycare says its been working great and that he interracts with the other children better, doesn’t get as mad and not scared to do circle time anymore. so it seems to be working, i even beable to potty train him and i believe its cause of it but one bad thing i notice since hes been taking it is hes very constipated and his tummy huts alot.. not sure what i should do about that?
Comment by BrookeH — May 11th 2011 @ 12:33 pm
I have an 8yr old son that was diagnosed with ADHD in June of last year. He struggled through kindergarten and first grade,and I started out totally against any medication. Every time I would read about the side effects, it would just scare me to death. Well toward the end of 1st grade I started to have a change of heart and started researching it more, because I saw that he could not control a lot of the things that were going on (hyperactivity, impulsivity, excessive talking). He’s been to a neurologist, psychologist and a psychiatrist, and he has been diagnosed with ADHD, but I’m wondering if it is more to it. He has been on Concerta (18mg,17mg), Adderall (only for 4 days), then Focalin (5mg,10mg, 15mg) and now Intuniv. The Concerta made him extremely nervous/anxious. The Adderall made him zone out, stare out in space and just very snappy and agry. The Focalin (each dosages) worked for the first week (teachers said he was like a brand-new child each time), but he would begin to go back to the same routine after the initial wk. I found it very odd that like clockwork the Focalin would start to wear off after one week. He also has anger problems, and sometimes the smallest thing can trigger it and he goes into a rage. For instance a little girl at his school (someone he obviously has a crush on) didnt tell him goodbye after he told her… he began to cry uncontrollably, tore a huge hole in his pants, and ran and hid behind one of the slides (they were on recess). Then after the incident he was extremely embarrassed. So it seems as if he cant control it. I’m a single parent, and I have my mom and his dad helping some, but noone seems to quite understand. His dad is pretty much against medication anyway, so we dont really see eye to eye. Everyones comments have been really helpful, and I’m really glad that i found this blog.
Comment by AdriannS — May 13th 2011 @ 7:01 pm
Help! My 6 year old son has been on Intuniv for about 3 months now. He is up to the 3mg. It had been working great. He was able to focus at school & keep his hands to himself. Just in the last week or so, he seems to be back to his old behavior. He’s more hyper, is impulsive, he is always touching everyone in class or annoying them by getting in their personal space. He’s acting defiant to a point as well. Why is the medication no longer working? He has been on Focilin and Concerta and had major side effects with both. He would cry at the drop of a hat. He was so emotional!! The Dr told us that is a side effect that means he can’t tolerate stimulants. I am at my wits end!!
Comment by Momof3boys — May 14th 2011 @ 6:29 pm
Mom0f3boys – I’m a mom of 3 boys as well – all with ADHD. They are all teenagers now and there is one thing that I have learned. There is no magic pill and no magic cure. Medication is one of the tools to help control the symptoms that get in the way of four kids functioning in society.
I’d recommend the book “How to Heal ADD” by Daniel Amen – a misleading title but full of information. Pumping yourself full of information is one of the keys.
Second – diet. I was never able to do the diet that was recommended by the books but I was able to make sure that they ate healthy, low sugared, foods. Fortunately for us, one of my sons had a milk/whey allergy so we had to cut out all boxed easy meals. Turned out to be a good thing. Sound nutrition is a key element to good behavior. Also – they have proven a link to the yellow food dye and ADHD. It does not cause ADHD but it makes the behaviors worse. (think cheetos, mac and cheese, doritos) If you are already feeding him well at home, what is he eating at school? Must school food programs are embarrassing at best.
Third, behavioral training – aka counseling. It will be good for you and your child. If you are married make sure your spouse participates as well. If you are divorced, make sure your ex participates as well . I have learned so much about my parenting techniques that I thought were right that weren’t, that I thought were ineffective that I should have stuck to my guns on, and so on…..it also validated that I was dealing with tough kids and to be kinder to myself. When they were acting like “normal” kids I needed to be kinder to the process.
Finally, there are a lot of other medications out there beside what you have tried. Are you seeing a pediatrician or a child psychiatrist? A good child psychiatrist is worth their weight is gold. Intuniv was initially release for the treatment of tics from tourettes (which is why my son takes it). We were pleasantly surprised by the improvement in ADHD behaviors, and had no idea it was being tracked to be released for ADHD as well. As pleased as we were it was not enough to control his ADHD – not by any means – it helped, but he was still out of control much of the time. He had been taken off stimulants due to his tourettes getting worse. He was better but not enough that he could function in a school setting, and his impulsiveness was becoming a safety concern. We added in Straterrba (a non stimulant for ADHD) and we have found the right mix for him!
This is a journey. There are no magic answers, no magic pills. These are tough kids that needs lots of love, hugs, and understanding and their parents need lots of love, hugs and understanding too. If you employ all the above elements – education, nutrition, behavioral therapy, appropriate medication, you will have a sturdy foundation for raising your child to the best of your and his ability.
Be kind to yourself and to him.
Comment by Rebecca — May 15th 2011 @ 4:51 pm
@momof3boys- Intinuv efficacy was established in two controlled clinical trials (8 and 9 weeks in duration) for some this medication does not offer long term effectiveness. With that said I hope that is not the case for your child. I have a 7 yo w/ Asperger’s diagnosis who is currently not on meds, I have thought about Initinuv, I tried Vyvanese- that was awful. He was irritable, overfocused, tearful and stated that he felt like all the love was removed from his heart. He is currently homeschooled due to all of the issues in school and the hits to his self esteem that I could no longer stand to witness. I am also a licensed behavioral health professional who would love for my child to attend school without repeated suspensions for disrupting class or being put at a desk away from everyone else because he disturbs others, or being teased by others because he speaks strangely or the educators doubting his gifted abilities because he is so disruptive and non compliant……but I have not been able to help him with this. I just wanted the school to stop calling every 5 seconds my son’s tics & stimming has minimized since he has been home. Unfortunately he will return to school this year because my family needs my income to survive. This is not easy for us as parents and I truly relate to the sharing on this site. Well said @ Rebecca.
Comment by nycndatriad — May 16th 2011 @ 9:49 pm
Hi, my son is 5 yrs old with Pervasive Developmental Disorder, his neurologist suggested intuniv to help him focus since he gets easily distracted and has a hard time following instruction. I’m debating on starting him on this medication. There’s only 3 weeks left of school, should i start him on it right away or wait until school is over? Is he going to need this medication forever? what are the consequences of taking this long term? Sorry for all the questions, i just hate having to put him on meds. I should mention that I do give him melatonin every now and then when he passes his bedtime and become hyper and I have no complaints, other than that he isn’t on any other medication. Please, any advise would help. Thank you.
Comment by Elaine — May 17th 2011 @ 6:35 pm
My daughter has been taking Intunive for almost a year now. We started out with 1 mg. and waited two months before going up to 2 mg. We are now on 3 mg. After reading some of the comments, I have to say that she too was very lethargic when we started the 3mg. I was so worried that I made an appointment with her doctor, but it only lasted two days, and she was back to normal. We’ve been on the 3mg for about four months, and we take it at night. I do have to give her melatonin because she doesn’t sleep through the night, and she also has a hard time settling down to go to sleep at night. We are now up to 3 mg of melatonin. I was just wondering if maybe anyone was on Clonodine with their Intuniv, and if yes, how is that working? She took only Clonodine at one point, but all that did was make her sleep.
Comment by Angel — Jun 14th 2011 @ 12:12 am
My son had ADHD FOR SURE, and one psychiatrist said ODD, and another psych said Tourette’s/Coprolalia, and another psychologist said he thinks possible bipolar disorder, and the Occupational Therapist says an “off” vestibular system.

My son was also on Intuniv with Clonodine. It worked fine. I tried Melatonin instead of Clonidine for a few days, but he couldn’t even fall asleep on 12mg. He was on 2mg Intuniv in morning, and .2mg Clonodine at night. He slept fine until we tried to increase to 3mg Intuniv. All hell broke loose. For one thing he was also on Zoloft (Sertraline) and Concerta.

Next chapter, he suddenly got such anger rages and cussing “tics” that he ended up in psych ward 3 months later (March) due to anger rages and threatening to shoot me with an airsoft gun. I had had enough. They took him off everything and changed him to Risperidone (Risperdal) and Strattera. It seemed to help at first, but soon realized he was acting “good” so he could get out of hospital (he TOLD me), and once home, his anger issues have remained for the past 2 1/2 months.

I will be open and honest, I have been on the edge of child abuse. He yells, screams, gives me the finger, and I am not at all the patient type, so I have given him back the same. I just now checked on drug interactions.com because I am not going to face the teen years like this (he’s 11). I found that what he is on now plus adding back the Concerta has no drug interactions, so I am trying this today.

I preferred to give him the Intuniv again, because that totally DID reduce the annoying on purpose behavior and the attitude problem and defiance, but there was some type of interaction listed. The psychiatrist we met last week for the first time (he’s new) has no clue what all the history is. I have lots of drugs left over from trial after trial. Intuniv, 1mg, 2mg, 3mg. Concerta 36mg, 54mg. Clonodine .1 and .2. Sertraline 50mg. Focalin 5mg, 20mg, and 30mg. It’s like I have a pharmacy.

The psych doesn’t know what we’ve tried, but I do. The former psych increased the sertraline and intuniv at the same time and that’s what pushed him over the edge. I do not trust them almost at all anymore.

I don’t know what to do. We’ve had intensive in-home therapists since December (which boils down to: they came 2 or so times a week for an hour). They no help. He’s been going to Occupational Therapy since released from hospital in March, no help really.

His dad is total antisocial personality disorder, we divorced, can’t even talk to him without total fight or sarcasm or whatever he expects me to do for him at the moment, (different story) but there’s custody issues. Now dad doesn’t even take the kids to give me a break.

My son today said he would call the cops on me because I made him sit down on the carpet and not move because he was annoying and yelling at his sister and then yelled at me and gave me the finger and cussing. I told him go ahead, jail would be a nice peaceful break for me. Sure, that was immature, but GEEEEEZZZZZZ.

Thanks for letting me vent!!!!!!!!!!!!!!!!!!!!!!!!!!!

I have heard that Strattera and Intuniv worked well together, and I think that is what I want to try, but have to wean him off the Risperidone before I can do that.

Every time I sit in the lobby at the Occupational Therapist, I hear women talking about what their child “has” and IEPs and there is a very poor new woman there that has a 4 or 5 year old and I just broke down crying one time listening to them all trying to explain to her what she has to do and who to call and all that bull crap that would totally overwelm anyone in this situation.

I am going crazy over here. I just want to take my kids and move to some deserted island with coconuts and fish and beautiful beaches, but yeah right…… at least there, my son could run off and catch some fish when he gets so angry, by bludgening them in the head with rocks.
Comment by Christie — Jun 16th 2011 @ 10:19 pm
Christie,

I can totally relate. My son is 9 and he is so mean and disrespectful and just nasty. He wanted a airsoft gun and a pocket knife.. there is no way I would give him any type of weapon. Last 8 months have been a nightmare.. a counselor and a therapist constant drug changes. He is now on 36 mlg of concerta and risperdol at night. Nothing seems to work. Same thing.. went in they said he had poast traumatic stress disorder, then next visit was ODD, next visit was ADHD. I am in denial I say Bi-polar totally. I think the medication doesnt work or its making him worse. I am at wits end. The therapist says call the cops on him (100 lbs 9 years old) Really? I would feel like stupid that I cant control my kid. I cant take him anywhere, cant have company because he embarresses the crap out of me. What about parent abuse? Cant beat them, dont want you to take things away, gotta be careful what you say but sometimes I am with you.. I am ready to leave and not come home somedays its so bad. I am tired His father isnt in the picture either. Kinda same issues. Some tell me to give it more time takes awhile to find the right combination of mediction.. others tell me to drop all the counselors and clean out his room of all priveledges. I know at this point I am lucky to have a job being late everyday because a kid refuses to get dressed or get in the car. Anything I say he argues with and says the most awful things to me. I grabbed him by the arm and tried to walk him to the car so he bunched a screen out of a door. My kid controls my life… so different from when I grew up. I never would have gotten away with any of this stuff… even my mother doesnt want him around because she says he is brat and needs his butt spanked. I think the same.. but with all these pros involved they say different. All I can say is your not alone on this.. I thought I was the only one with a kid out of control until I found this forum. I hope it works out for you and send you encouragement on getting through this.
Comment by Linda — Jun 17th 2011 @ 12:46 pm
Thanks!! I thought I would get bad replies, but yours made me sigh with relief. I tried the taking all his toys out of his room when he was in hospital. He has no TV, no video games, took out all but books and Legos are left. Of course ALL his nerf guns and any type of gun or plastic knife or sword or whatever could be seen as violent is GONE out of the house. The result, he doesn’t spend much time in his room anymore! He plays outside more. He doesn’t even play his DS much anymore. Video games were his main time-consumer, and they are gone and he doesn’t even ask for them anymore, so yes, GO FOR IT, TAKE AWAY HIS PROVILEDGES ALL OUT OF HIS ROOM EXCEPT EDUCATIONAL. He is different than your child as in he is very polite to strangers and school employees, etc. Everyone tells my how polite and charming my little boy is. Thank God. It must be Antisocial Personality Disorder, but you can’t diagnose that until 18. He’s a lot like his dad. Nice, witty, and charming on the surface and outside of the house, but once behind closed doors, is a devil to his family. Don’t get me wrong, he is the sweetest child alot of the time, but when he decides he’s going to be mad about not getting his way, the whole family gets it. Then he claims he cannot control it. Good luck to you too, has anyone ever said Aspergers about your son? My friend’s daughter has that and she is pretty rude and I don’t like her coming to play with my daughter too much (I feel terrible, but she is so rude and demanding and disrespectful.) Maybe that’s why my daughter has taken to her as such a good friend, like she reminds her of her brother and that’s the way she’s used to being treated.???
Comment by Christie — Jun 17th 2011 @ 5:59 pm
Our boys are alot alike. My son is very polite, charming even the therapist loves talking to him because he is such a joy to socialize with. He shakes hand and introduces himself like a salesman. He dad was a charmer.. conman actually. But we left when my son was 5…domestic violence. Really was hoping to have him on the right track by now. The therapist only believes in the reward system. I am thinking it will be a reward when he earns a something back. He doesnt have alot because he breaks his stuff when he is angry. I refuse to replace those items. Just living this way is exhausting its not once in awhile its every morning before school and all evening. Very rare we get a peaceful evening but those are the days he gets his way or something he wants. Sounds like a spoiled brat.. but he isnt spoiled so not sure why he acts like he does. He gets remorseful and tells others he feels bad how he treats his mom and he says he is retarded and stupid.. which he is not. But he does the pity party and then right back to being mean.
Comment by Linda — Jun 17th 2011 @ 6:12 pm
SAME THING!! Says he’s retarded and stupid and an a’hole, cries, says so sorry for how he behaves, etc. Last night he had a fit over having to eat barbeque chicken and potatoes!! I MADE him try some (he is too picky for life) and he acted like I was trying to poison him. He spit it out crying how he didn’t like it. Then the pity party, “I’m different, I’m screwed up”, etc. I said it’s not like I’m trying to feed you anything that millions of other kids don’t love to eat. I told him nothing is wrong with you, you just keep crying that you are so screwed up and you need to just stop with it and get over it. He finally ate the chicken because I would not give him anything else (like cereal he wanted), but not until I washed off all the BBQ sauce. What a crying freaking baby he was.
Comment by Christie — Jun 20th 2011 @ 6:40 pm
Christie/Linda–
Wow! This sounds so much like my son! He is 8 years old and besides having extreme ADHD and now signs of Tourette’s, he has been extremely aggressive and violent over the last year. We pretty much don’t go one day without having stuff thrown at us (knives, heavy things) or being cursed at. It’s horrible. I am scared to let him go outside and play most days. However, he doesn’t reserve this behavior for just us. He’s gotten in trouble at school and daycare and anywhere else we might take him. Not sure where this is coming from. When he’s having a “good” day, he is the sweetest boy ever. Some days, I just don’t know what to do (okay most days!) It seems to be getting worse. We’ve tried EVERYTHING! I could run a pharmacy out of my house, counseling, different parenting tactics. Nothing seems to help. He always feels bad after it happens, but he never seems to be able to control it when he gets mad (which is a lot of the time)! This may sound kind of weird, but it really helps me to hear this from someone else. Sometimes I feel like the only person in the world that has to deal with this stuff and it’s OVERWHELMING! We try so hard with him and I feel like we get blamed for all of his bad behavior from grandparents, neighbors, etc. They just don’t understand. I feel so bad that he has to deal with this. I worry about what it will be like for him when he gets older.
Comment by Heidi Gundersen — Jun 20th 2011 @ 9:07 pm
OH LORD HAVE MERCY ON OUR SOULS!!!!!!!!!!!!! We JUST got word from the principal that they are going to pass him into the 5th grade. He was held back by me in 3rd grade and has done so terribly in 4th that he should fail it too! Luckily, he must have passed his end of grade tests that he had to retake last week. We were so stressed, we just danced and screamed with relief, but will have hell to pay come next year I am sure!! Maybe some of his anger will calm down, he has been stressed for months over not passing 4th grade.

By the way, Heidi, my son had terrible tics, diagnosed Tourette’s, then in March, the hospital took him off Concerta, Intuniv, Zoloft, and Clonodine, and his tics have decreased so much that they only say he has a tic disorder, but they have improved 90% since off the old meds. May be the Risperdal his is now on helping control them, don’t really know. He is sleeping fine now, though. Before he could NOT sleep without Clonodine, even with the Intuniv.
Comment by Christie — Jun 20th 2011 @ 10:00 pm
Heidi, Your not alone for sure. My son says alot of the same things .. even the cussing at himself… and I can relate to the blame part. Seems everyone judges us when out kids act up. They have no idea what we deal with. Congrats Christie! I am glad school is out.. its a nice break from the hassle everyday. My son is refusing to take his pills now, he says they dont work. More I try.. the more he fights. This weekend we were with friends and he was good until we had to leave than he was nasty. Some of the girls were saying OMG how do you deal with him everyday?? Even something fun really turns out to be exhausting. If the meds work we definately dont have the right combination yet. Sad.. but I an happy to have the break and go to work.
Comment by Linda — Jun 21st 2011 @ 12:24 pm
Question my 4 almost 5 year old is taking 2mg Intuniv aroung 4PM (was giving it to him at night but was making him to sleepy the next day dr. said I could move it back, no certain time to give it?) and it takes .2mg of clonidine at night. Since starting Intuniv his sleep has gotten worst, takes clonidine at 8 (bedtime) doesn’t go to sleep until around 10, but wakes back up screaming around 12 and I have to go get him carry him to the bathroom to pee cause if I don’t he pee’s in the bed ( don’t know if this is from clonidine or Intuniv as he never pee’d in the bed), sweats so bad I have to wash his pillow case every day, is really pale, talks about monsters being in his room and only wanting to sleep in my room(never did before), his mood has changed alot during the day, just in the past few days he has seem to have gotten alot more aggressive, kind of like if his 19month sister hits him on accident he gets really mad and has to get “revenge” even though he knows that she is younger and wasn’t trying to actual hit him. I am at my wits end with everything I honestly feel like I am about to have a heart attack or pull all my hair out, he starts school in August and I am scared to death about what is going to happen…
Sorry this might not make sense and is probably an Engliush teachers nightmare to read, I just really need some help from other mom’s with ADHD children
Comment by Jennifer — Jun 25th 2011 @ 5:32 am
Sorry forgot the question, lol.
Are these 2 meds not working right together?

I had to call his doctor (he is neurologist) today cause he was going to run ou tof meds before he went back to see him, and they are giving me a sample pack cause more then likley the doctor will be changing his meds.

I heard that taking these 2 wasn’t a good idea as they are both bp meds and the side effects could be bad.

When my son started the Intuniv he was also taking 5-10mg of melatonin to help sleep but I stopped giving it to him and it wasn’t helping him at all.
Comment by Jennifer — Jun 25th 2011 @ 5:38 am
My son is six now he has been on meds sins 4 years. We have tryed alot of med he as been on intuniv for 6 months first 1mg and now 2mg. Hes doing better in school but cant sleep at night very good keeps tosing and turning i dont know what to do hes got purple bags under his eyes. Ive talked to his doctor and he perscribed trazeradon but i dont know its a freaken antipsycotic med for heaven sakes. The meds help with the focuse and lets him keep his personality but the sleep issues. PLEASE HELP
Comment by Maria — Jul 6th 2011 @ 2:59 pm
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Comment by Gordy Compson — Jul 22nd 2011 @ 12:42 am
Maria: My daughter is also taking 3mg. intuniv and having trouble sleeping. I give her 5mg of melatonin, and that is helping. She sleeps all night now. I started her off with 1 mg of melatonin and kept increasing until I found the dose that worked. I hope this helps. My doctor prescribed an anti depressant to make my daughter sleep, but I refused to give it to her. Melatonin is naturally produced by the brain to induce sleep, so it won’t hurt them. Children with ADHD don’t produce enough melatonin to sleep through the night.
Comment by Angel — Jul 22nd 2011 @ 12:57 am
For those of you against medication, lets take a look at my Autistic/ADHD son’s day shale we: It is 4:30 am and Tyler comes running into the bedroom screaming for one of us to get up with him. I stumble to my feet and say, “I’m coming”. I come to the kitchen to find him screaming and lying on the kitchen floor in tears because he wants chocolate milk. I say okay, let mommy get your glass. However, as I reach for the glass he throws his shoe at me because I wasn’t fast enough. I tell him no throwing, and next time it’s time out two minutes. I make his chocolate milks after spending two minutes explaining for the millionth time what nice words are. Finally I can make coffee. I get 20 minutes before its time to dress him. One article at a time we begin. It takes him an hour to finally complete the task between defying my requests, crying from frustration because the leg wholes keep moving, and putting things on backwards. He won’t let me help even though I try. Now it’s breakfast time. There are only about 10 things that he eats, so this one is easy. However, by the time he gets done he practically needs a shower because he can’t seem to find his mouth. Finally the bus is here. At 2:30 he gets off the bus and falls into the grass in a fit of rage. Transitions make him crazy. He screams everything he can think of at me, while pleading for a snack because he is starving from having lunch too early at school. The rage follows us into the house where he throws things, breaks things. Yelling doesn’t work, and you can’t rationalize with an irrational person. Time out only makes things worse too. Its time for the weighted vest, blanket and chewy. So after 20 minutes of holding him down with all of his sensory items, he is finally calm. But after only 1 hour this repeats. Dinner goes the same as breakfast, its the same food every night, and the same mess. Shower-time is a nightmare. He pleads, and screams, and cries not to take one. He kicks me, and hits me, and hides under the bed. He tells me he hates me and loves me in the same sentence, and finally with bribery of his favorite book he goes in the bathroom. After the shower we read his book, and I tell him to give hugs and kisses goodnight. The next four hours are spend like those in the yard after school until around midnight he finally falls asleep from sheer exhaustion. Finally, I have five hours. You should see weekends! So if you think you can handle one day with my child and your natural remedies, I would like to see you do so. Not medicating him benefits no-one, as you can see from our typical un-medicated day. I haven’t even begun to tell you about trips to public places, because those without medication are even more of a nightmare. I have the patience of a saint. I am also a special education teacher and have used thousands of natural techniques and remedies. Some kids DO need medication. Unless you have one of them, like mine for instance, I suggest you keep your “facts” and articles to yourself. Do you think we are unaware of what meds do? Do you think we haven’t exhausted all of our options? If you have a headache do you take Tylenol? If you have a cold do you use NyQuil? Do you eat a tums when you have heartburn? Well, when your brain doesn’t work right, you medicate it. Whether or not you agree, its a necessity in some cases, and also a life saver. Risperdal and Intuniv saved my son. Now the therapy can do its job because his brain works the way it needs to!
Comment by Leanne — Jul 29th 2011 @ 9:27 pm
AMEN!!
Comment by Heidi — Jul 29th 2011 @ 9:42 pm
That last post was just the tip of the iceberg. In the midst of the rage, he rants and raves like a lunatic, does constant police sirens (vocal stimming), and spins uncontrollably. He hurts himself by clawing his own face, banging his head on the wall, and hitting himself. He hurts the dogs on occasion because one might accidentally show him affection by licking his hand. He broke our TV, cracked it right down the middle because he was standing in front of it with a pez dispenser in his hand when the required weekly test came on. He repeats every sentence atleast three times, and barely makes eye contact with anyone. This is my child without medication.
Comment by Leanne — Jul 29th 2011 @ 9:53 pm
Leanne–
Have the doctor’s ever mentioned Tourette’s? I only ask because that sounds a lot like my son who has Tourette’s. Some of that sounds a little OCDish which is closely related to Tourettes.
Comment by Heidi — Jul 29th 2011 @ 9:56 pm
If you saw him now you’s be amazed. He is not even close to the child we knew a year ago. Between the therapy and the medication, he has been able to succeed. He has friends and conversation, eye contact and family dinners with us, knock knock jokes and trips to the grocery store. I didn’t medicate him to make him what everyone else wanted him to be, I medicated him so that he could be everything that I knew he already was. I am going to share my poem:

THE EYES OF AUTISM
By, Leanne
A poem for my son….

I look in the eyes of Autism everyday…
I see a world full of frustration, and standards never reached.
I see the looks in the grocery store when the noise is overwhelming, and the Autism peaks.
I see the lack of punishment we can’t enforce; for his Autistic temper might engorge.
I see the hugs and kisses between other parent and child; while Autism keeps ours more sporadic and wild.
I see the routines that can’t be broken, and the public places Autism is most loud spoken.
I see Autism next to me every night when I sleep; for the Autism fears being alone counting sheep.
I see the obsessions that Autism brings; from the constant sirens that an Autistic boy sings.
I see the few things Autism eats; No veggies, no fruits, he barely eats meats.
I see the struggles Autism has, and the simple task of putting on underwear makes Autism mad.
But most of all….
I see a want for compassionate eyes, to get through the days and cuddle through cries.
I see a genius there under that Autism spell, hoping that Mommy and Daddy can break through his hell.
I see a quirky smile peeking through here and there, laughing at silliness without a care.
I see a mountainous battle with which we can win, if we just stick together and hold up our chin.
I see my son, an Autistic boy, who deserves all the love the world can deploy.
I know that with time we can see, Autism is not the only thing that he means to be….
Comment by Leanne — Jul 29th 2011 @ 9:58 pm
He has been diagnosed with PDD-NOS/ADHD/OCD/Generalized Anxiety Disorder, he was diagnosed on the spectrum at age 3. We suspect ODD as well or Bipolar Disorder, but the rage and defiance could just be the Autism so we won’t know till later.
Comment by Leanne — Jul 29th 2011 @ 10:02 pm
His obsession is Police. He eats, drinks, sleeps, and dreams police. Every conversation is police. It has gotten so bad that at school they can’t get him to distinguish real from the fantasy police world he has created. He does sirens all day. The medication didn’t change this aspect of his personality. We are adressing it with therapy and teaching him that there is a time and place for police. He collects business cards. He must have hundreds by now. Also he is very social and he makes friends really easy, but without the medication and therapy I am not sure he would have friends. He takes it to an extreme though. If he meets someone one time, he loves them and cries for hours that he misses them. His cousin spent the night one night and he cried the next three days after she left because he missed her. He cries the same way after we go to the grocery store and the cashier talks to him. There is no separation between family and strangers. So we are also working on that with him.
Comment by Leanne — Jul 29th 2011 @ 10:08 pm
If you have any suggestions please let me know. My son (9) Seen a therapist from Feb thru June. 9 differnt medications during that time and everytime we went back she gave me a different diagnosis. From PTSD, ODD to ADHD. But in the beginning she sent sheets to the teachers and they didnt feel he had signs of ADHD and changed her diagnosis for that being the last. Well she called me in to talk to her each time in front of him and I said during these times that I have not noticed a change. My son heard this and was refusing to take the pills because they dont work. My son had most his anger towards me..he flips fo no reason and starts telling me off, and calling names etc. THe concerta is good for 12 hours the I need to handle his down time.. when he crashes. I have seen no difference with or without medication. Maybe I am confused.. if 1 pill wears off in 12 hours.. how long should I keep him on it to see if there is a change?? We tried 18 mlg went up to 27 so it had been over 6 weeks. No change.. I am discouraged. Cant seem to talk to this therapist.. she says when my son attacks me that we both need to take a time out. Really? Friends and family all think he is bi-polar.. mood swings so fast for no reason.. just thinks something in his head and he is angry and there is no reasoning with him. His episodes get longer and longer… yesterday was 9 hours with 12 different people trying to help throughout the day.. like dealing with a drunk. I dont know if I should go back to the therapist which was hard to find dealing with children.. a MD.. I dont know.. but I am exhausted. Is there vaild tests for these kids or is it all verbal and a personal opinion of a a therapist? I honestly think something is wrong like a inbalance or something. Any suggestions?? Linda
Comment by Linda — Aug 1st 2011 @ 5:19 pm
Oh Linda, this sounds so painful for you. Where I live the Children’s Hospital offers a multi-team diagnostic approach. The child/family is met with multiple times and evaluated by a pediatrician (for any metabolic/genetic issues), a neurologist, psychiatrist, psychologist, and then the team gets together to come up with their observations and a plan. I would suggest looking for something like that in your community or the nearest one to your home. It doesn’t sound like the therapist is helping and it doesn’t sound like the meds are helping. Some medications can make them even worse. We had one dr. put my son on meds that made him suicidal. We got him in for an emergency appointment (with another doctor) who said he was bipolar (which I really doubted – coincided with the new meds too much). Finally got another emergency appointment with a fabulous pediatric psychologist who totally got the whole picture. We have been with her ever since. If you live near MN – I’d recommend her in a heart beat, as well as our Children’s hospital system. Don’t give up, look for better help for your son. You know what you are living with and you are your son’s only advocate.
Comment by Rebecca — Aug 1st 2011 @ 7:34 pm
@Rebecca,

I would definately feel more comfortable with a team even with someone who could remember what they diagnosed my child with. She diagnosed me after talking to me for 10 minutes.. in front of my son she said I had PTSD and needed medication also. I am a survivor of DV. I went to counseling and dealt with all that years ago.. but for someone to talk to me for 10 minutes and diagnose me in front of my son I was offended. Some things I would rather leave in the past. My son treats me like his father did nagging, critical, put downs , non-stop lies, disrespect, demanding… but he is sweet and charming when he wants his way. It took 3 months to even find someone who dealt with children and accepted my insurance. I am in Michigan but most therapist want cash and wont accept insurance at a minimum of 150.00 a visit. Makes the options difficult for help. Been searching all day again and just coming up empty.
Comment by Linda — Aug 1st 2011 @ 7:59 pm
How about looking under child psychiatrist instead? What city are you by? I would think that one of the universities would have a program set up with their medical schools.
Comment by Rebecca — Aug 2nd 2011 @ 12:51 am
Leanne: I in no way whatsoever said I was against medication. Did you miss that I said my child is on 3mg of Intuniv? That is not a natural remedy. Maria was asking about how to make her child sleep. I simply let her know that I give my child melatonin to induce sleep, which by the way was doctor recommended. I did not give my child the anti-depressant because she is not depressed, and I didn’t see a need to give her something addictive for a problem that could be solved by giving her a natural remedy. Excuse me if you were offended, but I don’t deserve to be attacked! My child is a handful all the time, but I deal with it. Thank you very much!
Comment by Angel — Aug 2nd 2011 @ 1:02 am
Hello All (and thanks in advance for any feedback) –
I have 2 boys (10 and 14), both diagnosed with ADHD. Just to make it interesting, the oldest is more hyperactive/implusive and the youngest is more inattentive with no hyperactivity. Both were on Concerta (36mg and 18mg) respectfully. The almost non-existant appetite was the main problem (both are fairly thin), but the youngest also developed a tick with his eyes, then there’s the matter with it wearing off during (or before) homework. Other than that, the Concerta did work. I just started on Intuniv last night (I know … not much result to be able to speak of yet). My question is with sports. Both boys are very active in football. The oldest is particularly good and it is extremely important to him. Our pediatrician (whom I like and trust) knows they are very active in football, but didn’t mention any concern. I have today read things all over the internet about Intuniv leaving kids falling asleep in class, after school, not sleeping at night, falling asleep too early, lethargic, muscle weakness, should not be overheated, etc … These are the worse possible side affects I can think of for football. My pediatrician mentioned about sleepiness at first so recommended to start taking at night, but said nothing about ongoing sleepiness and other weakness. I don’t understand this 12-hours after taking sleepiness either .. I thought it was right after. I know the boys performance in school is primary but I know my oldest will be too depressed to study or care if this drug affects his football performance. I’m now confused and starting to regret the decision to switch until after the football season. : (
Comment by Paula — Aug 14th 2011 @ 5:59 pm
@ Paula

These drugs effect all kids differently. Intuniv made my son really sleepy (9 years old) , by the time they got him to 3 mlg he got really mean too. I dealt with it about 2 weeks after he got to 3 mlg and said this is not working. Concerta we were up to 36 mlg. I never noticed a postive change at all.. eating habits or sleep didnt change but the doc said I would have to deal with his “down” time.. meaning when the 12 hours ran out I would have to deal with him. Our down time was 4 hours of his temper tantrums for whatever.. crying spells, meanness… it was way worse. We just started seroquel. I have had the best luck with this so far. I was hesitant to try it because I looked up stuff on the internet about it. But its been 2 weeks and I have had some of the nicest days with my son than I have had in a long time. I have not noticed any side effects at all yet. Seems like forever to find the right combination and medicine when its needed. I wish you luck… hard to find what actually works without out all the negative side effects.
Linda
Comment by Linda — Aug 15th 2011 @ 12:15 pm
I had my 10 year old daughter on Concerta 27mg, Guanfacine 1 mg (which is a component of Intuniv) and Sertraline (or Zoloft) 25mg. We recently tried increasing her Concerta to 36mg and she became meaner and more irritated. We took her back down to 27mg and then decided to switch to Vyvanse 20mg. I like this much better. She doesn’t have such rushed speech as she did on the Concerta. Then, we moved her Guanfacine to the afternoon to try to overcome that downward spiral when her body is coming off of the stimulant. I didn’t notice much change in her behavior (for example, she was still impulsive) except for the fact that we didn’t have to give her Melatonin at night to sleep AND that she seemed to really get irritated and snippy. Then, one day last week, I forgot to give her the Guanfacine in the afternoon. She was so much easier to handle. I asked her the next day how she felt without the Guanfacine and she said, “You know, I think I feel better without it”. We haven’t been taking it for about 5 days now and I have definitely noticed a change and it’s not like the impulsivity has gotten worse or anything. She has a harder time falling asleep (so we’re back on the Melatonin) but she is much more pleasant. I truly think that after our experience with both Intuniv (last year) and Guanfacine this year and what I’ve heard from people on this site, the Intuniv/Guanfacine causes irritability and meanness. When social acceptance plays such a key role in our kids’ school lives, I would rather she be accepted by her peers as a nice kid to be around and get help staying organized and focused from the special ed staff than be considered a mean-spirited brat who terrorizes everyone (which is where she was headed). I think I now know that the intuniv/guanfacine is not the answer to her impulsivity issues either. Wondering how this school year will go – that’s always the true test. By the way, Intuniv made her so sleepy that we could never get past a 1 mg dose. She was a joy to be around at first because she was sleeping all the time!
Comment by Jane — Aug 15th 2011 @ 9:33 pm
My son was also on Intuniv, but we had to take him off because he got so angry and aggressive. I’m glad that I’m not the only once who noticed this. He also was thirsty and hungry all the time and had to pee a lot. He started wetting his bed while on it. The doctor’s told me these were not side effects of this medication, but the more I read the more I see these come up.
Comment by Heidi — Aug 15th 2011 @ 10:32 pm
@ Jane
“She was a joy to be around at first because she was sleeping all the time!”

I am sorry I had to laugh because I said the exact same thing when my son started the Intuniv.

He slept thru class and decided to keep doing it because it was the only way he stayed out of trouble and still got both recess.

Glad you found something that works now.
Linda
Comment by Linda — Aug 16th 2011 @ 12:02 pm
my son is 7 he has been on intuitv for 3 weeks now and was just put up to 3mg last week he is having sever nightmares everynight ever since we started it now his behavior is great but my son is asking to take naps or he goes out in the yard and falls asleep. as of today I’m not giving him another does. I love the way my son acts on it and he does too but it’s not worth the waking up at all hours of the night because of nightmares.
Comment by Tiffany — Aug 16th 2011 @ 2:50 pm
@Martine,
Do you have a child with ADHD/Autism? Just curious because you seem to not know much about it. these disorders are real, its not bad parenting, or social “issues”. I fed my son organically he received 7 vaccines at once and began immediately showing signs of OCD/ADHD/ODD. I tried homeopathic, Stimulants, Intuniv and Risperdol. The homeopathic & stimulants failed miserably. My family has suffered as well as my sweet boy for 3 years with this as well as many other families posting their stories and concerns. We parents of these beautiful children often stay up til wee hours of the night researching both sides; dont make us feel bad for trying to help our children have the most normal life we can. we communicate with our children about how they feel on meds and adjust them accordingly. Until you personally have a child with these severe disorders and are educated on both sides of the fence its best not to force your opinion on us making us feel like bad parents. We and our kids didnt ask for these disorders we are just trying to love them and help them. I bet i speak for all when i say that I would exhaust every dollar i ever made if it would cure my son and get him off meds. Unfortunately there is no cure all on either side so we must help our children learn and be as self sufficient as the severity of their disorders will let them be. these kids are suffering when they arent on meds and sometimes when they are. basically you just have to keep looking for right combo of treatment til you find a combo that meets your needs as unique as they may be. My son is PDD, OCD, ADHD has allergies to at least 12 foods and about every tree and grass you can imagine and to be honest he was on intuniv first and after trying stimulants afterwards we are back on this drug that is really a decent non stimulant. my journey is my journey as well as the others posting here. if you cant contribute positive information with out guilt you probably shouldn’t post at all. we are all just seeking kind wisdom from our friends that live lives like ours. To all you fabulous Ladies you are all great moms i enjoyed the rest of your posts and glad to be joining this forum. Keep it up and hope all your precious little ones get the treatment and meds they need to be successful in a world that doesn’t cater to them.Also My son is currently on risperdol .125mg, zoloft and intuniv 2mg. this is day 2 of risperdol he got a severe headache and threw up. Im really concerned should i continue this drug or should I lower his intuniv to 1mg and see if the headache goes away??? If anyone has tried these combo of drugs and has anything to offer up or your child has had these side effects i would love your wisdom. Honestly i’m rethinking risperdol altogether???? what to do?
Comment by Ashley — Aug 20th 2011 @ 4:57 am
Hi,my 5 yr. old son started Intuniv about 2 weeks ago.1mg at first now 2mg.Been on 2 mg for about a week.I love the way it mellowed him out just right but i don’t like the fact that 2 hours after he takes it hes passed out cold.Then up all night.I ask his Dr. if he could take it at night which would be the perfect fix because he has insomnia any way and the intuniv puts him to sleep,but the Dr.said no.Anyone know why he should not take it at night?I don’t want to go against the Dr. but hes falling asleep at school and i can’t have this.If it wasn’t for the wanting to sleep all day thing I would say the medication is awesome.Anyone have any advise?
Comment by Amber — Aug 22nd 2011 @ 3:24 am
And to all you people who are belittling people who let their kids take medicine…..when you have a child who beats their head upside the wall and inflicts bruises on themselves what are you supposed to do?Let them do it?Or get them medicine to help them?My son came to me last week and said Mommy i like my medicine….it makes my head feel not so crazy anymore.And look Mommy my bruises are going away.For 3 years i have cried and beat my own head upside the wall not knowing how to help my child trying every herb and natural remedy out there just to be knocked down.Something actually works and my baby is happy now.
Comment by Amber — Aug 22nd 2011 @ 3:36 am
When my daughter was taking Intuniv last year, the doctor offered me the option of taking it during late afternoon or during the day. I think it wears off after about 8 – 10 hours (is that why it would be better to have during the day?). I think it was a possibility to take later so that it could help with the downward spiral she would experience from the stimulant she was on. Guanfacine, which is the base drug of Intuniv, was something we tried next, but over time I really felt that it made her crabby as heck. I will tell you that the sleepiness should subside over time (for my daughter, it seemed to take quite a long time). The falling asleep in class for us only lasted a couple of weeks and the faster you increase to the next dose, I would think the more you would see him get pretty lethargic (he was still probably trying to catch up and regulate to the 1 mg when the 2 mg was started). I would give it a few more weeks to see if his body regulates a bit. By about a month, we weren’t seeing her fall asleep so quickly – just maybe a nap here or there on the weekend.

I have heard from my pediatrician that Intuniv is something that isn’t lasting as long as they had hoped and that some people are having to switch to a different drug after about 6 – 8 months in order to maintain effectiveness. Not sure if anyone else here has heard or experienced that . . .
Comment by Jane — Aug 22nd 2011 @ 4:28 am
Amber — It’s so frustrating when our doctors won’t approve something that we know others are doing with success and that we feel a high possibility it will work for us. Further, if they would explain better their reasoning, we might be able to make better decisions overall. My situation is similar however my child does in fact take his at night. This is our second week on Intuniv. I have two boys on it but for the purpose of this post, I will only address my youngest because my oldest doesn’t seem to have any sleepiness issues (yet). My pediatrician told us about the sleepiness side effect and stated that we would have to find the time of day that would work best for optimum results. But as it’s building up in their system, some will experience the sleepiness at odd times so until you reach the full effect of the medication, it’s hard to tell what time that will be. In other words, during the 2-3 week complete build up, the sleepiness might be all over the place so if you start changing the times, it’s like chasing your tail and I think it might be bad for the child to switch times from one day to the next during that time. We started at night so we are staying with that for now until we see a leveling off. Then we will adjust for optimum results. Of course, that is only speculation, but that *might* be the reason your doctor won’t allow it right now although it would be nice if he explained the reason to you. For the record, even dosing at night, there is sleepiness during the day at first .. sometimes in the morning, sometimes in the afternoon, sometimes after school. I am going through it too and it’s so hard to see my child sleepy and potentially messing up his grades already but I’m trying to stay positive that the end result will be worth it. In fact, during some material review this weekend, he could recall many things learned in class and that I reviewed with him which was a huge issue before. I can already see an improvement in memory even through the sleepiness.
Comment by Paula — Aug 22nd 2011 @ 12:11 pm
I’m not belittling people in fact your website helped my son’s dr told me that there were no proven side effects that I told him was happening then I told him about this site and that there are other parents out there that had the same problem that I did. he ignored me I know this much since he has been off the med he is sleeping all night and is back to himself
Comment by Tiffany — Aug 22nd 2011 @ 9:45 pm
Please HELP!

I have a 7 year old son with ADHD & behavioral issues. He’s been on concerta 72mg & risperidone 1mg for about a year now & his doctor recommended we change the medication to intuniv recently b/c she thinks it will help him control his anger and behavior issues more. The intuniv was not covered under his insurance & I had to get on a program to help cover the medication. I just received the intuniv yesterday by mail order & today I only gave him the intuniv 1mg and he had a horrible day in school. I know you have to wean them on to the intuniv but should I still be giving him his concerta & risperidone until he is on the 3mg? I’ve tried calling his doctor and the office staff and doctor have been no help with answering my questions. The doctor apparently doesn’t respond to messages or calls and the office staff refuses to help me. I don’t know what to do and I don’t want to overdose him on meds.
Comment by Raven — Aug 25th 2011 @ 11:27 pm
Whats Concerta?What is it for?I’ve heard a lot about it.I put my son on nighttime doses of Intuiv and hes doin so much better.I give too him about 6 and then he goes to bed at 9 and sleeps all night and no more falling asleep during the day.
Comment by Amber — Aug 26th 2011 @ 3:13 am
@ Raven,

Wow.. scarey enough making changes to medicine without getting answers or support. I will say I am shocked 72 mlg of concerta for a 7 year old. My son tried concerta and the max was 36 mlg. My son is a heavy 9 year old. So to me that seemed high. This is all I know about the medicine .. concerta is good for about 12 hours, Intuniv is supposed to be around the clock, risperdal was supposed to help my son sleep. When my son was on concerta he would have down time which was awful and they wanted to add Intuniv (again)..plus he took the 1mlg of risperdal at night. When my son took Intuniv he slept all the time and his awake time he was mean as ever. I refused. My son said the risperdal made him ill so he refused to take that. We now take 25 mlg of seroquel at night .. nothing else. I am more comfortable with the one tablet a day. I know somethings take time to adjust too but I need alot of answers myself before I am comfortable giving my child anything. Intuniv is new that is why alot of insurance companies wont approve it yet. Your his mom, his spokesperson.. I think if it were me and I only gave it to him one time and couldnt get answers I would not continue more until I got answers. Good luck.. we just always hope we are making the right choices for our children.
Comment by Linda — Aug 26th 2011 @ 12:00 pm
@Raven…I agree with Linda! Thats a very high dose of Concerta for a 7 yr old..My son is 13 and 120lbs and starts the school year off on 36 and then we will increase to 54. I wanted to mention that we added Intuniv two years ago when my sons tics got so back due to the Concerta (being a stimulant). It took him several weeks and increasing the dose. He had very hard days in school (guess is was the 5th grade). Fighting etc.. after a while it stopped and he has been on it since then 3mg. He takes it in the morning alon with his Concerta. As far as your doctor and the lack of communication? Find another doctor!! We went with a
psychiatrist. We have to make the best choices we can for our kids. Good Luck and God Bless
Comment by Kathy — Aug 26th 2011 @ 1:33 pm
Thank you ladies for your help. I didn’t give him the Intuniv today because I didn’t get any further information on it & just kept him on his Concerta. As far as his doctor is concerned I’m already in the process of looking for another doctor that accepts my son’s insurance. That office is by far the worst office I have ever been in and they are very unprofessional. I was told the doctor will not answer a simple question via phone calls or messages and I have to come into the office. The doctor is ALWAYS late on her appointments and I have even waited as long as 3 hours to be seen in the past. I even spoke to the office manager who said she will help me & call me back with an answer before they closed yesterday & she did not. I must have called that office so many times yesterday trying to get help and I kept getting the run around. I’m just at my whits end with them & this was really the icing on the cake.
Comment by Raven — Aug 26th 2011 @ 1:54 pm
I’m new to this website, but it’s been very informative. I started my 10 yo son on intuniv after a terrible experience with stratera. Within days of 1mg, his tutor, who did not know he took meds at all, commented on how different he was. No chewing on pencils, picking at hang nails, talking off subject… and he was able to read non-stop for 30 minutes. I thought I was going to cry! Now we’ve worked up to 3mg and he’s a mess. His frustrations and inability to control those frustrations are getting worse and the sleep thing is just a train wreck. I’m wondering if we should drop back down to 1mg where we saw obvious improvement with little/no side effects. Will we see a decrease in the positive effects as he becomes used to it? Has anyone has success for an extended length of time at 1mg? Also, what about the melatonin, anyone seeing success with 5mg at night? Anything to help him sleep and not obsess over every noise he hears would be a victory. For years I’ve never connected all these dots but reading your stories has truly helped. Thank you and please forgive me if these questions have been addressed earlier, I’ve only read about 1/2 of the posts.
Comment by Amanda — Aug 29th 2011 @ 1:07 pm
Amanda, We experienced a similar effect with our 12-year-old daughter. After getting through the initial sleepiness, which subsided quickly on 1 mg, she went to 2 mg, and then, 3 mg. She just could not handle the 3 mg. She was sad and tired all the time. After backing all the way down to 1 mg, which did seem to have some positive effects, most noticeable the disappearance of her minor tics, she is now taking 2 mg. She has taken this dose for the past year. It seems to help her focus so that she is better able to handle days off her stimulant (focalin), as well as improve her “hyperness.” Go with what works for your son! Our psychiatrist emphasizes that every child is different, and the dose that works for one may be inappropriate for another even if they are a similar weight and age.
Comment by jalynn — Aug 29th 2011 @ 4:07 pm
Amanda,

My son was bumped up to the 3 mlg of intuniv and he was meaner than ever. That lastest 2 weeks and I couldnt deal with it took him back down to 1 mlg then off completely to try something different. He does take Melatonin. He takes 3 mlg and helps alot. We both are sleeping better!
Finding the right med and mlg is tough. My son takes the seroquel now. Works great and he has no side effects. Good luck
Comment by Linda — Aug 29th 2011 @ 7:32 pm
My son will soon be six years old. We have been on the Intuniv for about a year now. We struggled with dosages at first, I have been so hesitant to give meds to my child but I was at my breaking point as to what to do. He has done ok with this med after finding the right dosage. He got through Pre-K with this and did ok. Teacher was very understanding and knew “how” to deal with him. His outbursts got a bit better but we still struggle at home. Now he is in kindergarten and he is not focusing at all. After speaking with his doctor she has suggested we use a low dose stimulant med during school days with the Intuniv 7 days. I have not used stimulant meds with my son yet and very nervous. I am also struggling with him not listening, focusing on what adults tell him to do and his outbursts or crying tantrums. does anyone have any advise?
Comment by Kelly — Sep 17th 2011 @ 11:05 pm
Kelly, my son was diagnosed with ADHD/ODD at age 4. Luckily we have a wonderful developmental pediatrician that I completely trust. Jack started with Concerta and did well until this past year(age 7). We couldn’t yet move up from 36mg Concerta due to his weight so the dr. added Intuniv. We did 1mg for a week and then up to 2mg. Just recently we moved to 3mg due to impulsivity. He has had the sleepiness but it eventually improves. For Jack these meds have made an unbelievable difference at school. He is doing great and I give complete credit to the meds. He is now old enough to articulate that he needs them or he will have a bad day. I have no regrets in using meds. Good luck!
Comment by Angie — Sep 18th 2011 @ 1:50 pm
Thank you Angie for your comments. Can I ask if you have had any behavioral problems? I struggled major with this in daycare when we tried Intuniv last year. He has gotten better but his mouth is getting him in trouble now. It is awful. His kindergarten teacher says he is not mean at school but since we have changed the medication time he got a bit mouthy with the teacher this past week. So embarrasing. Mostly he is mouthy at home. but then at a quick second he is the most sweetest loving child. I struggle with understanding these outbursts (some anger, nothing violent, and crying outbursts) Any advise?
Also can you give me any advise to the stimulant medications? Should I wait until he is on a school break to start him on this med? Also any side effects I should look for? Thanks for any advise anyone can give.
Comment by Kelly — Sep 18th 2011 @ 4:10 pm
Kelly,

Jack struggled with behavioral problems as a preschooler before we started any medications. It was the main reason that we went to see the dr. in the first place. He was just so impulsive – it seemed he couldn’t stop himself from picking on other kids, flipping light switches, overreacting, and being aggressive to his sister. The impulsivity really went away for the most part with the Concerta. His doctor actually stopped using the ODD diagnosis with him. But this last year it started “breaking through” some, so that’s why he suggested the Intuniv. The only side effects that Jack has ever had was poor appetite from the Concerta. He eats his best meal usually at breakfast, not much at lunch, and variable at dinner. He has not had an issue with weight though and is growing normally (very tall for his age). The doctor just suggested letting him eat when he’s hungry, so we try to add healthy snacks when he asks for something. I guess another side effect may be that he tends to pick at his skin alot if he has a bug bite or scratch. We have to give him a lot of verbal prompts to not do that as it takes things so much longer to heal. ON the Intuniv, he’s only had the sleepiness. It was significant when he first started (fell asleep every day around 4), but then went away. Eventually he was having difficutly falling asleep and we added Melatonin (natural). That seems to help with him getting to sleep at night. When we bumped him to the 3mg, the sleepiness hit again. It took a lot longer for that to wear off, but now he rarely falls asleep after school or dinner time.

Our biggest struggle is the mornings. He is very “mouthy” and hyperverbal until the med kick in. I’ve considered giving the Intuniv at night to see if it would have more of an impact in the a.m. when the Concerta has worn off, but not sure I should mess with it during the school year. I may try that over Christmas break just to make sure he isn’t falling asleep during the day.

Overall, Concerta and Intuniv have both been very good for Jack. We have not ever considered switching meds. The Concerta is long lasting and he doesn’t have “rebound” issues with it. But every child is different and you’ll need to find what works for yours.

I don’t think I’d wait to start over school break. In my opinion, every day that he struggles in school is time missed for learning! Good luck!
Comment by Angie — Sep 19th 2011 @ 1:20 pm
Oh thank you Angie. I am struggling right now with all of those issues. The teacher and I write daily notes on his progress and behavior. I am very embarrased to say he had a “awful” day at school today behavior wise. He has shown that ugly side of him today and usually doesn’t do that with “new” people. The doctor has suggested waiting until a break from school but I think I may call and talk to her tommorrow after the day he had today. I just changed his Intuniv back to mornings about a week and a half ago and we struggled last week with keeping him awake, but i think that stage is over. He wasn’t sleepy today. I am trying a new reward program at home to keeping on tasks and getting things done around the house even with his little brother too. I use his Wii for when he is bad at school, but most days it doesn’t really phase him. He gets upset about it at the time that i take it from him and even acts out but then it just doesn’t matter. I can’t find anything that works. I am so frustrated and so worried about him at the same time. Like the teacher said he is intelligent but he is just so impulsive and I am finding if he isn’t interested in it, (racing, sports, cars etc….) he just isn’t going to focus on it. His school papers alone tell me he is bored with what they have him doing. But writing and learning words are parts of school. I have thought about talking to the teaching in giving him more challenging work, but I don’t know if that will help or just frustrate him more. From what I am seeing in the last week or so I am not so sure the Intuniv is working anymore. Do medicines stop working after awhile? He has good days and bad days, today being one of the bad ones. But he didn’t do this bad in Pre-K I don’t know why he is having such a hard time in kindergarten.

Thanks for your advise and comments. They mean alot.
Comment by Kelly — Sep 20th 2011 @ 12:46 am
My son is one year older with the exact same tendencies… Stimulants were awful for him… They made him lose a ton of weight and really they didn’t help much… We tried almost all of them and he is now on risperdol for OCD and aggression and intuniv 2mg for ADHD… This has worked quite well and he has gained his weight back because that is a side effect with the risperdol… Just something you could try that is non stimulant … Good luck I’ve been in your shoes and know how frustrating finding the right meds can be.
Comment by Ashley — Sep 20th 2011 @ 1:57 am
I just wanted you to know Kelly I’m so sympathetic to you and your sweet boy… My son is severe ADHD , OCD and on the autism spectrum possibly. While he is the most frustrating human being I have ever met he is also very loving and sweet…I have struggled to understand all this for about three years now… It all started when he was three an we just got a clear diagnosis 1 year ago…. I hated stimulants but like you thought I should try them ( they didn’t work well and the weight loss was awful ). My son would stem really bad when they started wearing off. We are now on the risperdol and intuniv 2 mg as I mentioned before. Just wanted you to know you are definitely not alone and it’s hard dealing with the embarrassment from people who do not understand what our kids have. You are doing a fabulous job taking care of your sweet boy and keep looking researching and asking others with similar situations their advice. Just wanted to encourage you and help you in anyway I can. Warm thoughts and prayers your way
Comment by Ashley — Sep 20th 2011 @ 1:58 am
My son does take intuniv 1 mg in the morning and 1 mg at 4 pm. It works really well for morning.
Comment by Ashley — Sep 20th 2011 @ 2:00 am
Thank you so much for the warm thoughts Ashley. My son is already on 3mg of Intuniv. i wonder if splitting it up would be the trick. It used to work pretty good but lately i don’t know what to think. I am really nervous now about the weight loss with trying a low dose stimulant. He eats really good now but still a tall thin boy. He is healthy and weighs what he is suppose to, I just don’t want him to loose weight. But at this point I just want him to get a good education and if he is not paying attention now and having fun in school it is just going to get worse. I feel like I have no choice. I haven’t heard of risperdol, is that a stimulant or non-stimulant med? Thanks again for your support and prayers.
Comment by Kelly — Sep 20th 2011 @ 3:17 am
Risperadol is a non stimulant… It has really helped my son…. And you are so welcome for the thoughts and prayers
Comment by Ashley — Sep 20th 2011 @ 3:23 am
I hadn’t thought of splitting the dose of intuniv. Jack is on 3mg, so maybe 2mg in the a.m. and 1mg at night. I know that the biggest issue with that will be our insurance company – I think they will count it as 2 separate prescriptions and either won’t pay for both or will charge the copay for both. Unfortunately since it is pretty new, it is in the highest tier, but worth it if it helps. Thanks for the idea Ashley! I may check with our physician.
Comment by Angie — Sep 20th 2011 @ 1:10 pm
Good evening all,
Spoke with my son’s doctor today. She has suggested putting him on Focilin XR. I am ready horror stories on-line. But I have read success stories. Has anyone used this drug? Also the dr has suggested we keep him on the Intuniv also. Is both medicines necessary? I am having a hard time with this decision. He has had such a rough week at school, and it is only day 2 of the week. He is being very defiant and disruptive in class. I speak to him about it and it just goes in one ear and out the other. How frustrating, I am inviting any advise or ideas anyone has to help with this defiant behavior.
Comment by Kelly — Sep 21st 2011 @ 12:40 am
I had one son on Focalin – it was wonderful for him. My son that is on Intuniv needs a second med – the Intuniv alone isn’t adequate for his ADHD. Due to his tourettes we switched to a non-stim (strattera). Don’t NOT try it due to fear. All these kids are so different (I have 3 ADHD boys – all on different meds), see what works. Sad to say, much of it is trial and error.
Comment by Rebecca — Sep 21st 2011 @ 3:34 am
Our son was recently diagnosed with PANDAS and already has a diagnosis of ASD although verbal and mostly functional before the PANDAS. He was originally on Ativan for anxiety before this last diagnosis and although it was helpful it made him very lethargic and weepy. After the PANDAS, the psych has put him on therapeutic antibiotics for the strep, 10mg celexa and only 1mg of the intuniv for the tics caused by the PANDAS disorder. We didn’t see much change until we introduced the intuniv about 3 weeks after the other meds. The psych told us that it wasn’t the amount given but the combination of meds that makes the difference and why they wait between each new med. The small dose of intuniv helps calm the tics so he can now sleep (they were keeping him awake) and also eases the brain impulses so the ocd behaviors have greatly improved as well. The psych stressed to me that if you give too much of the intuniv then you will start to see insomnia and lethargy due to their blood pressure going too low. We have been instructed to monitor his pressure 3 times a day. He is 13 and if his lower number goes below 50 then we need to back off the med and start back slowly. We saw this when we increased from .5mg to the 1mg and had to back off. Just a thought that maybe the doses are too high if you are seeing the lethargy during the day and the insomnia at night. We give him 1 dose at 9pm each night and he goes right to sleep at 10 and usually sleeps until 7am. It has not been a miracle up to this point but we are much better than we were a month ago when I had to take him to a crisis center for throwing himself against the wall when the PANDAS was raging in his system.
Comment by Robin — Sep 21st 2011 @ 5:22 pm
@Rebecca: You are right, it is trial and error. My daughter has been on Intuniv for over a year, but I have noticed that it no longer works for her. She seems to have built up a tolerance. We had her on 2mg for a while, then we went up to 3mg. 3mg stopped working, so we went back to 2mg, and then back up, and that worked for about a week. Her teacher complains constantly that she can’t be still. It’s just so frustrating. We have tried Aderrall (sp?) and Focalin. Both make her blood pressure high and her heart rate out of control. She actually ended up in the pediatric intensive care unit when we tried Focalin XR, so it seems we are stuck with a nonstimulant. We are starting Straterra tomorrow, so I really hope that works.
Comment by Angel — Sep 23rd 2011 @ 2:12 am
Good evening all,
Tomorrow we change back to evenings with the Intuniv and will start the Focalin on Saturday morning. Wish us well, he is going through so much right now. I really hope this new combination works. I am a little nervous after researching the use of Focalin. I have read good and scary stories. I invite any comments anyone has on these med’s. He has been so up and down all week. The last two nights he has been “really” sleepy. I just think the Intuniv is wearing off and making him sleepy unless he is coming down with something. Wish us luck and any comments are invited. Thank you and prayers to all you parents going through adjustments and changes!!!!!
Comment by Kelly — Sep 23rd 2011 @ 2:30 am
Hello all,

I spoke with my son’s doctor yesterday, and he said that switching Jack to taking the Intuniv in the evening may work well for his bad mornings. So I skipped the dose this a.m. and will start giving the 3mg in the p.m. tonight. Hopefully any adjustment will be short and happen mostly over this weekend.

Good luck Kelly! Keep us posted on the Focalin.
Comment by Angie — Sep 23rd 2011 @ 1:29 pm
Good evening Angie,
I am in the process of switching my son back to the Intuniv in the evenings. It has not worked at all with school. He had the worst week yet. I switched it to mornings about two weeks ago. The doctor said he would be sleepy for about the first three to five days. That was not the case. He was like not being medicated at all. After the fifth day he got really sleepy at school and at night. In my opinion it takes about three weeks to a month to get fully regulated in their system. At least that is my experience. We missed the dose this morning and started it in the evening tonight. He has been so hyper this evening. Took him to see Spy Kids and that seem to calm him some, but lord before we got there it was a major struggle. Tommorrow morning I am starting the Focolin to help with the focus in school. He is not focusing at all in school, he has just been loud and disruptive. I hope in the weeks to come I am going to see and his teacher will see a change. I wish you well with your adjustment period. Thoughts and prayers will be with you.
Comment by Kelly — Sep 24th 2011 @ 2:38 am
Good luck with Intuniv at night. It caused my child to not sleep, and it didn’t last through school. I switched it to mornings, and that helped for a week, then it stopped working at school again. We are now trying Straterra since she can’t take stimulants due to racng heart and high blood pressure. I also found in my research that Welbutrin usually works well when stimulatns nor nonstimulants work. Just a thought.
Comment by Angel — Sep 24th 2011 @ 8:28 pm
Good evening. Started the Focalin Saturday morning. I am not impressed right now. He has been very weepy, angry if things don’t go his way (more than usual) and mouthy. Does it take a few weeks to get this in his system and regulated or is this side effects that won’t go away? Today was his birthday and I had to cancel his trip to Chuck e Cheese because he was so “off the wall”. I am going to see how he does in school tomorrow but I am not impressed. Has anyone had any of these effects with this medicine? Should I give it a chance or call his doctor about changing? Any imput will be appreciated.
Comment by Kelly — Sep 26th 2011 @ 1:28 am
To Kelly,

Focalin can cause some angriness, especially as it wears off, but it shouldn’t make his behavior more erratic — rather the opposite.

Our 13-year-old daughter has taken it for 3 to 4 years, but it is not one of those drugs that have to build up in the system. Usually, when it wears off, it’s gone out of the bloodstream. We were able to cut the dose of Focalin once she started on the intuniv, and use XR 5 mg, which is a pretty low dose. I don’t know if you are using the short-acting or extended release. When she was younger, the extended release did not work for her. Good luck with this trial. Be sure and tell your doc about the mood changes. Best to you and your son.
Comment by jalynn — Sep 26th 2011 @ 3:52 am
Thank you for your comment Jaylnn. We just started using Focalin XR 5mg two days ago. His mood began becoming erratic and angry about 6 hrs after the dose. So do you think it was wearing off? Should I give it a few days this week or do you think it is too low a dose? I am new at the stimulants medicines. He has been on Intuniv for over a year. We give this to him in the evenings. His mood got a bit better this evening after that dose. Confused, frustrated and in need of advise.
Comment by Kelly — Sep 26th 2011 @ 4:16 am
@Kelly
Our son could not take Focalin…it also made him angry, cried etc..when we first started him on simulants.. That was when he was 5..he is now 13. After alot of trial and error, we found that he does better with a “methylphenidate” like Concerta..The Focalin is a type of “dexmethylphidate”? He tried Adderall which is also a dex? We have always had the best results with a methylphenidate?? He takes Intuniv as well…It helps to educate yourself on these drugs and how they work..makes you feel better informed..But beware!! try not to pay attention to all the bad info out there on the internet…get information from you doctors and pharmacist…GOOD LUCK
Comment by Kathy — Sep 26th 2011 @ 1:38 pm
Just an update for my 11 year old son. We went through hell, had him hospitalized in March. He was having anger rages involving threatening me and my daughter. They got him off Concerta and Clonodine and Zoloft and Intuniv.

He now takes 50mg Strattera and .5 Risperidone. He sleeps well, he is doing much better in school. He is rarely the hyper I used to go through. He is trustworthy not to harm himself or others, as in he has “common sense”. HE EATS!!!!!!!!!

He still gets mad and flies off the handle, (usually due to his sister) but it is much much less and way manageable. I am happy after years of trying all the psychs’ suggestions! I hope you all can find your kids’ happy recipe.
Comment by Christie from May 2010 — Sep 26th 2011 @ 7:59 pm
Thank you for your comment Kathy. I have been so obsessed with researching the internet on stimulant med’s. I have read more good than bad on the Focalin XR stimulant. I decided to try it and was not happy about it over the weekend. He got a really good night sleep and instead of giving him the “wants” for breakfast I got up and cooked him a healthy breakfast. He ate very well. Then I sent him off to school on his third day of this stiumulant. I informed the teacher of the changes in med and anxiously waited the day to go by today to find out how he did. I am a single mother of two and work full time. I picked him up this evening the he came running to me with a smile and told me about his wonderful day and how good he was and how he was taking his time coloring in the lines and doing his work quietly. He never had his behaviour care flipped today. I was so proud of him. Also this eveing he completed all his nightly tasks without whinning, arguing and getting mad. He even had an hour to play what he wanted. It has been a wonderful evening. I haven’t been able to relax and enjoy my wonderful son for a long time. He is in bed now but not asleep yet. Hummm wonder if he is going to have a hard time getting to sleep? We haven’t had this problem yet.

This is the first day of the school week and I am going to see how the rest of the week holds but it felt so good to have some good news today and have a wonderful sweet child to spend time with. Most days he is so difficult and attitudal. I did speak with his doctor and she said to give him the rest of the week. I really hope this is the start of a good combination. I want my son to get a good education and to make friends. Right now he has so many social problems he doesn’t have any friends and when he does have a family friend to come and play with him he doesn’t get along with them or he just doesn’t have any interest in playing with anyone. I hate seeing him not playing with other children and interacting in a healthy way. I hope this changes too.

Sorry to go on so long, wanted to share my good day with everyone. Thank you all so much for your support and posts it has really helped ease my mind.
Comment by Kelly — Sep 27th 2011 @ 1:11 am
Kelly – so good to hear that the new med is going well! It’s wonderful that your son’s sweet personality is shining through!

Jack’s transition to the Intunive in the evening is going well. A bit harder to get him up in the morning, but the morning behavior is much better. I gave his teacher a heads up on the change and she’ll let me know if she sees any negative changes.

I did get his “midterm” report card and he’s doing awesome in school!

Best of luck for the rest of the week!
Comment by Angie — Sep 27th 2011 @ 2:53 pm
Good evening Angie,
I am happy to hear that Jack is doing well with the Intuniv. I found when we first started taking the Intuniv he was hard to get up in mornings too. We started going to bed earlier and now he gets up fine. My son hates going to sleep and hasn’t taken naps since he was 3. But if he gets that extra hour or so sleep his behavior and getting up in the morning improved tremendously. I also think eating a much healthier balanced breakfast and dinner helps with behavior and attitude and focus in school. We too got a progress report today. He got one bad mark but the rest were satisfactory. He had his first substitute today and they said he told the sub all day this is what Mrs Penry(his teacher) does. He is too funny. He had a very good day today also in school and the evening went smooth. He is like a brand new child. I just pray this good streak stays with us. Good luck with your mornings and I am happy to hear your son is thriving and doing well in school. Have a great evening.
Comment by Kelly — Sep 28th 2011 @ 1:05 am
My son is 8 years old we have been battling ADHD since the beginning of first grade, and let me tell you it isn’t easy! We started him out on Concerta in the second grade due to some harsh side effects from the Vyvanse, At the beginning of this school year he was taking Concerta 36mg in the morning, and 2.5mg of clonidine at night .. I started noticing some changes in his school behavior verses his behavior at home. I saw the commercial about INTUNIV, and immediately called his doctor to see if maybe we could use the INTUNIV with the Concerta. WOW!!! What a difference it has made. He takes INTUNIV at night 2mg, Sleeps all night, and really is better focused at school all day. I wished I had switched him sooner. The doctor says he cannot increase the dosage of the Concerta to 56mg until he weighs 50 lbs. I was so discouraged at this so I was desperate to try anything. The INTUNIV seems to be working great! Also for those moms out there that get frustrated with medications. It really is a matter of finding the right one for your child. All kids are different so they react to medications different than other kids. BE PATIENT, and just find a really good pediatrician that will work with you. It is amazing. I just see alot of frustrated parents mostly moms that seem like all hope has been lost, but there is hope if you just stay actively involved with the child. Sometimes children do grow out of it. You just have to invest alot of time and effort in finding what works for your child.
Comment by Cherie Flores — Oct 11th 2011 @ 9:58 pm
My 12 yr old son was prescribed Risperdal for his ADHD symptons. Any feedback on this?
Comment by Kristi — Oct 19th 2011 @ 3:19 am
Hello all,

Just an update on Jack and the switch from a.m. Intunive to p.m. Intuniv. It didnt’ go well at all. We gave it a few weeks, but it seemed that his mornings and evenings were worse. The teacher didn’t note any changes at school, so that was okay. We moved back to a.m.’s and overall saw a big improvement. Not sure why – maybe just some honeymoon affect, but I’ll take it. He’s been going to bed easier too.

Kristi – I haven’t had any experience with Risperdal – sorry!
Comment by Angie — Oct 19th 2011 @ 1:20 pm
Angie: I have also noticed that the Intuniv has a honeymoon effect when switched to a different time of day, or when we stop it for a few days and start again. My daughter is now taking Straterra in the mornings and Intuniv at night. The straterra has been a huge blessing. She is on 60 mg and is doing wonderful at school. She is no longer getting in trouble every day, and is actually finishing her work ahead of the other students, and it is correct. I know that all children react differentlly to medicine, but I would definitely recommend giving Straterra a try.
Comment by Angel — Oct 20th 2011 @ 12:29 am
HI,
IT IS THE FIRST TIME I AM ON THIS WEBSITE. I READ A FEW COMMENTS ABOUT INTUNIV. MY SON ( 13 yers old) HAS BEEN TAKING INTUNIV FOR THE PAST MONTH. HE WAS PREVIOUSLY TAKING TENEX .HE IS ON THE AUTISTIC SPECTRUM , BUT HE ALSO HAS ADHD AND OCD . HIS ATTENTION HAS IMPROVED ( IT’S EASIER TO DO HOMEWORK NOW ) , BUT HIS STIMMING GOT DEFINETELY WORSE. DO YOU PLEASE HAVE ANY SUGGESTIONS?
Comment by ROSARIA — Oct 29th 2011 @ 8:38 pm
I have 3 sons. My 12 year old is what most people think of as a typical child. My 10 year old is off the charts ADHD (absolutely CANNOT be still, not talk/make sounds, or think before doing some amazingly stupid things – if he’s not on his meds). My 8 year old is mild ADHD, moderate ODD.

We started the middle child on Focalin when in 1st grade. It worked, but got the “zombie” effect; so, after several months switched to Concerta. Concerta helps his focus immenslly and works great to control the hyperactivity and talking, not as great on the impulsivity, but does help reduce the impulsive decisions that could result in severe physical harm to himself or others. One thing we did find (both on the Concerta and the Focalin) is if his dose is not high enough, he experiences extreme anxiety. The dr told us this is actually a common thing and that increasing the dose will decrease the anxiety (I know, weird, seems counter intuitive). He is right. Each time we start at a lower dose, the ADHD symptoms are controlled, but he has anxiety. Dr increases the dose, the ADHD stays controlled and the anxiety goes away. Eventually the anxiety returns, dr increases dose, anxiety goes away. He’s now on Concerta 72mg. Dr. says he’s not comfortable going higher. I’m a bit concerned about what we’re going to do if the anxiety comes back. He’s been on 72 for over a year now and that is usually about the time frame we start seeing the anxiety return. Dr. is talking about adding Intuniv rather than changing the stimulant med to see if that helps when/if the anxiety does recur.

We started my 8 year old on Concerta when in kinder at the suggestion of his psychiatrist. Bad move. He had always had an anger problem but after starting Concerta he became prone to sudden violent outbursts of temper that ended up in him being suspended from school (in Kindergarten!!). I wasn’t real comfortable putting him on Concerta anyway b/c our biggest problem with him was the ODD not the ADHD. Additional research on Concerta revealed that in some kids it can cause feelings of extreme anger. Great! So, let’s give it to the kid who has anger issues. We dumped the psychiatrist and went back to our regular pediatrician who seemed to know way more about this stuff. He started him on Intuniv, which is used for ODD. Amazing improvement in the defiant behavior, but we had problems with the insomnia/daytime sleepiness at 3 mg. At 2mg, still there, but not so much of a problem. He also takes 3mg sublingual melatonin, and that helps a lot. 2mg not working so well anymore; so, we went back up to 3. I was hoping since he’s bigger now, that it would be ok. No. Night-time insomnia and daytime sleepiness is back and seems to be getting worse after about 6 months on the higher dose. I’m reluctant to try the stimulant meds again after what happened with the Concerta the first time, but we gotta do something. We initially gave the Intuniv in the morning, but switched to right before bed as that made the daytime sleepiness less. After reading the posts here, I’m going to try giving it a few hours before bed and see if that helps. Anyone have any other suggestions?

Also a note on the decreased appetite with Concerta. A hint another mom gave me was she buys Ensure for her son to drink during the night. We’d been having problems with ours getting up in the middle of the night and eating junk; so, I started buying the generic ensure for him. Now he drinks that and goes back to bed. He gets a better night’s sleep and his weight is actually going up!
Comment by Cathleen — Dec 2nd 2011 @ 3:31 pm
i am a 17 year old in high school and i have recently started up on intuniv along with 72mg of concerta each day.i started on 1mg (intuniv) for three weeks once in the morning.
i have found that since i bumped up to 2mg a day, that i have had LITERALLY, model student behavior. and i can not emphasize how serious i am when i say LITERALLY.
everyday the teachers and principal call my mom(by their choice) and tell her that they would like to take the time to say how they would like to tell her ,how amazing i have been doing in school since i have started up on this medicine.
im sure that you are saying to yourself oh big deal all kids can easily do that good.
well im a kid that has quite doing meth,cocaine, and ecstacy everyday, with occasional ghb, ketamine, barbituaries, and acid (both pcp and lysergic acids) useage.
i did homeschooling after getting blacked out drunk at school and trying to fight my principal and the later called to the scene resource officer.
i spent my time selling ecstacy to fund my habbits.
i have never done perfect in school until this year, and this medicine has definately helped, in such ways as making me feel to mellow to fight, misbehave our even laugh at other students negative behavior to encourage it, but at the same time without making me feel high off of it.
i have found that drinking 1 full 12 ounce cup of water at least every 30 minutes(if not more frequently) has made the medicine much more relaxing on me. (p.s. i am 5’11” and 235 pounds with a body that is very used to medicines) the water has helped me make 2 pills as effective as 5, but i have found that i have to keep drinking constantly throughout the day.and i feel that the water helps my liver and/or kidneys alot easier to all the meds i have to take.
in other words , i think that all the water makes my kidneys not as damaged or affected(made less healthy) as badly from all of my meds.
remeron has helped with bedtime, no insomnia at all. but i need to eat a piece of bread with butter 30 minutes after taking the remeron and trying to sleep after that even if i dont feel drugged up from it ,will get me to fall right asleep.sleep alnight, no groggyness in the morning.
Comment by forrest t. — Dec 7th 2011 @ 6:00 pm
Hello,
This is my first time on this site and I have already read so much useful stuff. I have a 6yr old daughter who i’ve been struggling with for several years. She is aggressive, impulsive and plain out mean at home to us and her siblings. But at school she is shy, reserved, behind and pretty much keeps to herself. After being in therapy for a year with little improvement, I decided it was time to seek help from her pediatrician and try out meds after we concluded that she does suffer from ADHD, ODD and a little OCD. She is in the 1st grade now, which she will probably repeat since she is still at a kind level. He first prescribed vyvanse but after 2 days on that she was all speedy, wouldn’t sit still, kept doing this weird movement with her jaw. I took her off. We waited a few days and started intuniv 1.5weeks ago. I have already noticed much improvement at home, she is polite, helpful and responsvie at homework time.
The only problem that we are encountering is her waking up several times a night. I give her the meds after school around 3pm because doing so in the AM made her very sleepy. I have started to give her melatonin to help her sleep through the night. Last night wasn’t good but I realized I gave her the regular kind not the extended realese. Anyone use melatonin? Reccomendations?
Comment by Michelle H. — Dec 14th 2011 @ 8:09 pm
Hi. My son is 6 years old, and was diagnosed with ADHD when he turned 5. He is now taking 27mg of concerta and 2 mg of intuniv. We are about to increase the intuniv to 3 mg because it seems like nothing is working anymore. He is always saying no to me no matter what i ask him to do.He basicly laughs in my face when he sees me getting upset. Everything is an argument, he purposely does things to upset me. It is so hard for me to not lose my temper. The worst part is that his 2 yr old sister is watching every little thing that he does and is starting to learn his behaviors because she thinks that is what normal is. My son has problems in school. Can’t sit still, or keep his hands to himself. I thought this medication was supposed to make things better but it hasn’t. 2 months ago, everything was working great at home and at school and then it was like someone just flipped a switch and now all of the ADHD symptoms are back. Does anyone have any tips on how to handle him saying no all the time? Spanking doesn’t work, time out doesn’t work. Nothing works!
Comment by Andrea N — Dec 15th 2011 @ 1:20 am
Im glad I found this site, its nice to see others that are experiencing some of the same things I am seeing with my son. He also was diagnosed at age 5 with ADHD and has ben on several medications, ending with Focalin which seemed to do the job…….but after about 6 months he got ticks that went form infrequent to very frequent. We stopped the Focalin (he was taking two doses, am and pm, at 10mg per) I have not put him back on any stimulants and per his Dr we are now trying Intuiniv. He started with a very low dose and weve barely gotten to 1 mg and tonight did 2mg. Even with the low doses there was really no reduction in the ticks so Im hopeful that the increase dosage will have an effect. My question to anyone who might know, is that if the ticks subside, is it because of the Rx, and what happens if he stops it or the dose is lowered? Do the ticks come back?? Im not a fan of all the stimulants and thankfully intuniv is not, but just the whole idea of depending on this drug long term frightens me. Any input or experience someone has to share would be greatly appreciated. Thank you!
Comment by scott — Jan 2nd 2012 @ 2:09 am
My son is on his third week of intuniv & I’m wondering, if he misses a dose, will it take another two weeks for him to get used to it again? He is a sweet boy, he is just difficult to handle & I’m jus trying to figure out how to handle him. He also takes Procentra.
Comment by Allyson — Jan 6th 2012 @ 2:32 pm
Yes thank you all for so much useful information! My 6 year old son just started taking it TONIGHT (5pm) and we are anxious and excited and hopeful to see improvement. I thought there was something about a bad taste in the mouth, as already he has woken up complaining of that, but I’m looking for more recent feedback. Anyone?
Comment by Sage — Jan 9th 2012 @ 3:24 am
Concerta causing eye rolling

We have a 9 year old son diagnosed with Moderate Severe ADHD. We have had him on meds since he was 6. He went from thinking he was a weird kid to loving school and being a straight A student with friends. As nerve racking as it has been we’ve been very pleased with the positive results of meds, therapy, school involvement and learning techniques.

The meds now seem to be the problem. In December we moved my son from 27mg of Concerta to 36 mgs. He started rolling his eyes in just a few days. We dropped the Concerta totally and have started on Intuniv (1mg).

Our psychiatrist mentioned Tourette, but suggested we change meds and see if things improve.

Obviously we hoped we would have seen improvement by now (1 week), but we can’t see any change. We move to 2mg of Intuniv tomorrow.

Has anyone been down this path? Did the eye rolling get better?
Comment by Mike — Jan 17th 2012 @ 12:25 am
I have 2 boys a 10yr old nd a 7yr old both of them has ADHD my 10yr old takes Alleral XR 35mg nd Intuniv ER 3mg at night to help him.. Both of my boys Meds work every well nd they r improving alot.. Of course they have their days when they want 2 be bad but the meds work..
Comment by Beth — Jan 17th 2012 @ 4:39 am
My nine year old daughter just started Intuniv on Monday afternoon (three days ago) and I have several questions. My first question is if anyone has any experience with the Intuniv if it is broken or crushed? My daughter has a very difficult time swallowing pills and we are really trying hard to swallow this but she is biting into it before swallowing it. I called Shire and they told me it would be absorbed into the bloodstream faster if it is altered. So I was wondering what people’s experiences were with that.
Now for a little history about us and then for my next question. My daughter stared taking Adderall XR when she was seven years old in second grade. The Adderall worked great for the first year but by third grade she was up to 20 mg and it had stopped working. In the middle of third grade we switched to Vyvance for about three weeks which was a disaster. She had the worst mood swings and would go days without eating a thing and then binge non stop for several days in a row. We then switched to Focalin XR which worked beautifully for her. The only problem was she needed a pretty high dose right from the start as she is very athletic and seemed to matabolize it very quickly. 30 mg seemed to work like a charm for her from the winter through the rest of the school year. Unfortunately at the start of this year the Focalin stopped working and even when we went up to 40 mg we saw minimal improvement. So in November we switched to the Daytrana patch. The patch seemed to work better than the Focalin, however, it seems to take about 3.5 hours to kick in in the morning and she doesn’t put a morsal of food in her mouth all day. So we just started the Intuniv this week and for the first two weeks we are using it in conjunction with the Datrana patch. The doctor said when we increase the Intuniv to 3 mg we will stop using the patch. Now for my question…. I’ve noticed from all the blogs that I’ve been reading that most kids are on a combination of Intuniv with a low dose of stimulant. Has anyone had any experience of going back to an old medication that used to work after being off it for a while and then combining it with the Intuniv? I’m wondering if since my daughter did have so much success with the Adderall and with the Focalin at first if it is worth trying a low dose of either of those in conjunction with the Intuniv? What I want to know is once these meds lose their effectiveness does that last forever or can you go back to them after not being on them for a while? She has been off the Adderll for a little over a year and off the Focalin for three months.
Any advise would really be appreciated.
Thanks,
Comment by Tammy — Feb 2nd 2012 @ 5:12 am

The Best Time of Day to Take Intuniv

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