The Best Time of Day to Take Intuniv

Comments (scroll down to add your own):

1. 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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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

13. @ 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

14. 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

15. 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

16. 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

17. @ 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. @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

25. 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

26. @ 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

27. @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

28. @ 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

29. 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

30. 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

31. @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

32. 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

33. 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

34. 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

35. 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

36. 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

37. 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

38. 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

39. 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

40. 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

41. 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

42. 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

43. 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

44. 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

45. @ 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

46. 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

47. @ 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

48. 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

49. @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

50. 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

51. @ 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

52. 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

53. 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

54. 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

55. @ 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

56. 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

57. 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

58. @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

59. 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

60. 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

61. @ 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

62. 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

63. @ 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

64. 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

65. 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

66. 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

67. 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

68. 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

69. 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

70. 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

71. 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

72. 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

73. @ 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

74. 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

75. @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

76. 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

77. @ 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

78. @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

79. 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

80. 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

81. 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

82. 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

83. @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

84. @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

85. 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

86. @ 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

87. 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

88. 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

89. 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

90. 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

91. 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

92. 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

93. @ 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

94. 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

95. 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

96. @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

97. 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

98. 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

99. @ 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

100. 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

101. Thank you Dana and Laura. Your thoughts have helped.

     Comment by Julie — Apr 22nd 2010 @ 1:12 pm

102. 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

103. 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

104. thanks julie! i will let you know how it works.

     Comment by christy — Apr 22nd 2010 @ 7:53 pm

105. 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

106. 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

107. @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

108. @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

109. 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

110. 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

111. 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

112. 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

113. 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

114. @ 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

115. 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

116. 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

117. @ 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

118. 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

119. 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

120. @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

121. @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

122. @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

123. 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

124. 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

125. 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

126. 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

127. 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

128. 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

129. 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

130. @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

131. 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

132. 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

133. 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

134. 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

135. 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

136. 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

137. 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

138. 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

139. 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

140. @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

141. @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

142. @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

143. 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

144. 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

145. 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

146. @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

147. @ 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

148. @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

149. 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

150. @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

151. 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

152. @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

153. @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

154. 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

155. @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

156. 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

157. 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

158. 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

159. 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

160. 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

161. @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

162. 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

163. @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

164. 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

165. 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

166. 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

167. 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

168. 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

169. 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

170. 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

171. 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

172. 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

173. 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

174. 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

175. 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

176. 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

177. @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

178. 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

179. 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

180. 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

181. 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

182. 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

183. @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

184. @ 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

185. @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

186. @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

187. 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

188. 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

189. 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

190. @ 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

191. @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

192. 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

193. 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

194. @ 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

195. 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

196. @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

197. @ 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

198. @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

199. 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

200. 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

201. @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

202. 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

203. 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

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