Intuniv for Treating Tics and Twitches

Written by dad - 164 Comments

As I’ve noted in the past, our oldest son has a history of tics and twitches. In the past, these have come and gone, often associated with stressful periods in our lives, and never lasting more than a few months.

This past fall, our son (eleven years old at the time) started middle school, and shortly thereafter the tics returned. They’ve presented as eye blinking, nose wrinkling, and a funny little mouth stretch (for lack of a better term). While we kept hoping they’d go away, they haven’t.

We’re now pushing six months, our eleven year old has turned twelve, and there have been no signs of improvement. Since this is by far the longest he’s had them, we decided to have him checked out.

After evaluating him, the doctor recommended two possible pharmaceutical solutions. I should note here that, in addition to the tics, he’s rather high strung, and we’ve also been having some issues with his aggression toward his brothers.

Lexapro vs. Intuniv

The two options that we were given were Lexapro (escitalopram) and Intuniv (guanfacine; the time release version of Tenex). Lexapro is a selective serotonin reuptake inhibitor (SSRI) that is often prescribed as an anti-depressant. This would help with his anxiety, and could also reduce the incidence of his tics.

Intuniv, on the other hand, is an alpha-2-adrenergic agent that is often prescribed for ADHD, and is also thought to be effective in treating tics. After a good bit of research, as well as consultation with our family practitioner, we decided to go with the Intuniv.

He started on a 1mg/day dose for the first week, going up to 2mg/day this week, and 3mg/day next week. We’ll then take him back in to get checked out by the doctor. While we still haven’t seen an effect, we’re still ramping up to therapeutic levels. I’ll update when we know more.

Real-world side effects of Intuniv

While our son hasn’t been on Intuniv for very long, we have noticed some minor side effects. For example, he’s had a bit of an upset stomach and reduced appetite, especially since we increased the dosage to 2mg/day. He’s also been more tired than normal, and has been waking up at night and having trouble falling back asleep.

Published on January 28th, 2010 - 164 Comments
Filed under: Health
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Comments (scroll down to add your own):

The side effects of sour stomach and fatigue should gradually reduce over the next few weeks. All the best with your son.
Comment by Greg — Jan 29th 2010 @ 8:35 am
Hi! My son will turn 10 on Wednesday. He has had tics and funny little movements for several years. Diagnosed this past year with Tourette syndrome and OCD. He has been on Abilify for about 6 months which has shown positive results. Due to the tics still showing up in full force about once per month for about 3 really bad days….Dr. just added Intuniv to the mix. We are in the first week so I haven’t seen any changes yet. Look forward to reading about your son and updating you on mine:) Best of luck….God Bless.
Comment by Stacee — Mar 8th 2010 @ 1:19 am
I think medication should be the last resort. Have you tried letting your kids just be kids? They shouldn’t be perfect, and being extra active, full of tics and twitched is just something common with kids. I think in the US you medicate kids too easily, it’s like you can’t stand them being kid and you want to control them and turn them into non-bothering adults. Let them be! Besides, I don’t think “how to medicate your kid” should be a blog posting, ever. When one gets to the extent of having to medicate a kid it is because of something extreme that no one would like to share with a bunch of strangers.
Comment by María — Mar 28th 2010 @ 12:43 pm
Maria, 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 get all your facts straight first!!
Comment by christy — Mar 29th 2010 @ 4:30 pm
christy, I totally agree with you! I don’t want my child to have to be on meds to control his ADHD and tics, however for them to function in this society as normal as can be I need to make that happen for him! If we aren’t advocates then who will be for our children! Maria don’t make assumptions unless you have walked in our shoes!
Comment by lynne — Mar 30th 2010 @ 2:32 pm
Lynne, I agree with you as well. There is nothing more devastating than to hear that your child is diagnosed with any disorder that will require medication on a daily basis so that they can function and participate in life as their authentic kid selves. The emotional/psychological effects on kids living with untreated ADD/ADHD is of the greatest concern. These kids suffer from extremely low self-esteem, self-hatred and social isolation. Ultimately, the repeated sense of failure both academically and socially can lead to even more devastating consequences. My own son has dealt with suicidal ideation prior to beginning treatment. He was ten years old at that time. Just ten.

We may all be strangers by face and name, but our shared experiences are what draw us together in venues such as this one. Maria, think twice about the criticism you level against those of us who seek support. Though you may not need it, the rest of us need to know that we are not alone. God Bless to all-Shannon
Comment by Shannon — Apr 2nd 2010 @ 10:42 am
It is so helpful to hear all your comments. My son was diagnosed with ADHD a few months ago. He also had Tourette’s Sydrome. I have been trying to avoid medication by setting up many measures at to school to address his issues but it has come to the point that that medication is a necessity. I have been feeling very guilty about the decision. He is very bright and is doing well is school but is becoming more and more frustrated. We have decided to use Intuniv for both the ADHD and the tics but I am concerned about hwo relatively new it is. Can anyone provide any feedback? I am very concerned about the side effects? Do you keep your kids on it for the summer or take them off?
Comment by Tracy — Apr 22nd 2010 @ 9:39 pm
My grandson of 12 has ocd and tourettes. Abilify helps with the tics and anxiety. What helps most with the ocd and behavioral problems is to eliminate gluten–all forms–from his diet. That includes peanuts and pasta, not just bread. I know it sounds simplistic but it actually works. This has made a huge difference. We can tell if he had a cookie or donut at school by his increase in ocd and temper tantrums. Research at Yale has shown OCD to be caused by excess glutamate in the neurological system. In clinical trials, an amino acid, NAC, was administered to help with glutamate removal. Check out all the info on the internet about this by googling “glutamate OCD trials.” NAC can be found at all health food stores. Check out the sites that list all the foods that contain gluten or glutamate. Please note that Intuniv increases glutamate levels in the brain so this drug may not work in children with excess glutamate problems. Good luck to all of you with these hurting children.
Comment by Sharon — May 1st 2010 @ 6:58 pm
My son is 6 1/2 and was diagnosed with ADHD. He has neurological tics and sensory disorder. We began treatment with focalin xr 15mg. He is responding well to this for he has no side effects. In fact, he NO LONGER has sensory issues. His report card reflected dramatic improvement in all areas of his learning. His attention and ability to remain focused for longer duration of time is incredible. However, we find that when he does not eat, he tends to get very angry and irrational. Does anyone else experience this? At the end of the day when he comes off the bus, the medication must begin to wear off and he becomes hyperactive, impulsive, angry and aggressive all over again. We are considering intuniv in addition to foaclin xr. Is there anyone out there experiencing these issues and have you tried the focalin, intuniv combination? I’m worried about putting him on two meds. However, I know he needs it to keep him stable. I hate seeing him suffer.

And Maria, medication has been my last resort. For our family, it was a matter of safety for our son. He was impulsive (eg. running into the street without considering oncoming traffic (even though since he was 2 we have taught him this), sleigh riding from a 20 foot drop with no fear, jumping on top of a TV stand with a 46 inch TV behind him, running the “display” track at a sporting goods store for an hour while trying to buy him a new pair of sneakers..) Do I need to go on?

Please do not judge a mothers intuition when they know their child is in need of help. My son screamed from his room “I hate my body!!!” When I asked him why he said, “Because my leg keeps shaking and I CAN’T MAKE IT STOP! I can’t sit criss-cross applesauce at school!!!!” That my friend, is a cry for help. So the other day he says to me, “Oh, mama, I don’t need that medicine anymore, my legs don’t shake any more and my eyes don’t blink and I can keep my mouth from opening up all day. Oh! and Mama.” “Yes, baby,” I replied, “I can read!”

You be the judge of that.
Comment by Melissa — May 3rd 2010 @ 11:24 pm
Author: Shannon
@Melissa-Melissa, my son is now 12 yrs old but your situation sounds so familiar. At 6 yrs old he too lacked impulse control and was non-inhibited by potentially dangerous situations. ie: Standing on the top of the play structure at recess and jumping to see if he could do it. Broke his wrist. Though injury rarely resulted, he pushed the limits of safety regularly. Part of this was due to a pronounced sensory integration issue. In order to “feel” things the way we do, he had to do it bigger, harder, etc. On top of that the lack of impulse control put him in dangerous situations regularly. Add to that the ADHD and OCD. It was so much then for both my son and the entire family. He has been in ongoing talk therapy with a wonderful psychologist for six years. We only introduced meds when talk was no longer enough to manage his issues.

Now with all that being said, we have found that medication has changed his life over the last 3 1/2 years. My son also hated his body that wouldn’t “listen to him” and he hated himself. It was agonizing. He does take fluoxetine (prozac) to manage his OCD symptoms which is critical. We added Focalin last year for the ADHD, but did find the same situation as you. Wearing off, etc. His psychiatrist then put him on Concerta to see if we could get better results. The significant tics started six months ago. Blinking, licking his upper lip and it was bad. Kids at school have made fun of him relentlessly. Let’s not forget, he’s in sixth grade. So we have now added Intuniv to the mix. It seems to be the answer! Tics are gone! He does not take the Concerta on the weekends, but does have to take the Intuniv. Without the Concerta is does make him very sleepy. As with many other posts, we found dosing him at night was the best solution. So he takes his Prozac and Concerta in the morning and Intuniv in the evening between 6-8pm.

Melissa, there is profound help to be discovered through careful consideration with medications. I applaud you, as it is such an agonizing decision. Your son is not a lab rat, but experimenting to find the right dose makes you feel guilty. I am here to tell you that there is a light at the end of the tunnel. We have had to adjust dosages over the years as he grows and issues fluctuate. But, in general he is a content, intelligent, sociable boy. He is able to maintain friendships at last and I do not fear for his safety or question his judgment when he is away from me. We were truly where you are today, just six years ago. Have faith in yourself and your son. We have learned to take joy in the small strides and roll with the other punches of life. It is a long road, but we can all do it. You are not alone!! Absolutely not! Hang in there and let us know how you are both doing. Prayers for all-Shannon

Btw, happy to share more details about our experience on Intuniv for the last 2 months-
Comment by Shannon — May 4th 2010 @ 9:59 am
Shannon,
Thank you so very much for your response. I have peace in knowing we are doing the right thing for my son. Thank you for letting me know that I am not alone. I am a kindergarten teacher, but nothing prepares you for when it is your child with a disorder.

Question re: OCD… are predictable anger outbursts and irrational reasoning associated with OCD?

We head to the dr. tomorrow to discuss Intuniv.

Once again, thank you
Melissa
Once again..
Comment by Melissa — May 4th 2010 @ 11:54 pm
Melissa,
With regard to OCD…before my son was medicated for his OCD he had very irrational, obsessive thought patterns. For instance, if he saw one bug in the house every square inch of the house “could” have bugs and must be checked. That fear would escalate into unable to sleep because he is “watching out” for any bugs that might be there. Eventually, bedtime rituals became unreasonable. He would wrap himself up like a burrito in his bed sheets so nothing could get him. But let me say Melissa, for the child who has gotten “stuck” with a thought in their head their fear is real. The thought is so persistent that have to acknowledge it with obsession.

I am not a psychologist, but we have a wonderful one for my son. No one is more qualified than a psychologist for diagnosing and treating this disorder. And, for my son medication was the answer. But we went through 2 years of the irrational thoughts or fears before we decided to go with medication. Again, a highly qualified psychiatrist is the only way to go in my opinion.

I hated labeling my son with all of these disorders. Some it was pride on my part but mostly fear of what it meant for him. Who would he be with all of this “stuff?” Well, who he is now is a capable, secure, content 6th grader. Meds allowed his talk therapy to be more effective for him on many levels. Meds do not eradicate OCD, but can give him a chance to gain back a sense of control when his OCD is pushing too hard.

I admire you Melissa. Having the courage to consider some of the possibilities (which can be scary) shows how much you love your son. The bravery of mothers who face these challenges each day is the sort that is unsung and somewhat long suffering. It is our quiet (and not so quiet) determination to understand our children and advocate to the world on their behalf that makes us extraordinary. The very essence of bravery is a fireman. Of course they are scared every time they enter a burning building, but they go inside anyway. So, as our extraordinary children go out into the world each day, they too are brave. Their lives can be scary places at times, but they forge ahead despite their fears. And, it is often ugly and hard. But they do it, just like us.

Hope it goes well today Melissa. Let us know! Will be thinking about you and your son today. Shannon
Comment by Shannon — May 5th 2010 @ 7:38 am
All,

This is my first visit here today. I came here looking for information in Intuniv and found so much more! My son was 4 when the violence started (he is 7 now). He was showing signs of autism, ADHD, bi-polar and Tourettes Syndrome, although no signs were stronger than any other. The only saving grace medication for him at that time, to control his anger, was Risperdal. Over the past few years he has stayed on Risperdal but thas been on several other items as well to help control meltdowns and the tics. The Tenex and Vyvanse was not doing the trick and his school was complaining A L O T so his psyciatrist gave us a few Intuniv samples and we just started them yesterday. Hope to see some improvement in the next week or so.

I have 5 sons all together (all 4 are older than the son I just spoke of) and have all gotten through life without any ADHD or associated problems.

Maria, you really did pluck me hard with your comment above. I KNEW something was not right with my youngest son, his behavior and violence was something I had never seen before. We dont choose to put our kids on the medications so we dont have to deal with him. Quite honestly, as of right now, my husband and I both expect that our youngest son will be with us during his adult life. He is not “slow” but unless there are a few breakthroughs prior to 11 years from now, I cannot see him functioning daily by himself. This is not something we choose, this is something we manage on a daily basis. Be thankful that you are not in the same position the rest of us are.
Comment by Joanne — May 6th 2010 @ 2:51 pm
Oh! Melissa (and others if applicable) …. one other thing I forgot … you commented, “However, we find that when he does not eat, he tends to get very angry and irrational.” One thing to consider is that low blood sugar can cause these symptoms as well. I am a Type II diabetic but started out as hypoglycemic. Not eating causes aggitation, irritability, and a need to eat ANYTHING in sight. Just something to think about checking for.
Comment by Joanne — May 6th 2010 @ 2:56 pm
Thank you Joanne. We did have him tested for this in the past because I thought the same thing. While he feels better once he eats, he will still be irrational in certain situations (with or without food). Maybe it’s time for a re-check.
Thank you,
Melissa
Comment by Melissa — May 6th 2010 @ 4:32 pm
My son was diagnosed with ADHD in January. He also has Tourette’s Syndrome. We opted for Intuniv because of the issue with his tics. We have been so pleased. His teachers have noted much improved behavior in class and we have have noted much better behavior at home. The outbursts you describe sound more associated with the ADHD than OCD (my son also has elements of OCD). I also want you to know how hard it was for my husband and I to decide to put our son on medication. We tried every route before we went to medicine and I am sorry I wasted so much time. Good luck.
Comment by Tracy — May 7th 2010 @ 8:18 am
Thank you, Tracy. Thank all of you for your encouragement. I was having the worst morning and I came to work and opened this e-mail. I truly appreciate you sharing your stories with me. I know we have all been there and it makes it more meaningful to talk to someone who knows exactly what I am going through. Any tips on how to have him swallow the Intuniv????? Oh, what a morning it was. He has a hard time swallowing the med…any tips are surely needed!!! Thank you!
Comment by Melissa — May 7th 2010 @ 8:29 am
My wife came up with the ingenious idea of peanut butter (a bit like “a spoon full of sugar”). Put a dab on a spoon, stick the pill in, and let them eat peanut butter. Cut the pill up if needed.

The added benefit is we use the term “peanut butter” instead of “meds” or “pills”.
Comment by Greg — May 7th 2010 @ 8:37 am
Melissa, I know what a challenge it is to take the pills. My son is the worst medicine taker and has made himself vomit up every medicine I have ever had to give him. So when we decided to give the Intuniv and found out it couldn’t be crush or broken you can imagine how nervous we were about. What we did was train him how to take a pill using mints the same size of the pill. I placed the “pill” on his tongue and had him swallow water quickly. It took many, many tries but he finally took got the hang of it so that when it was time for the actual pill he was a pro. Also it didn’t hurt that I promised a pack of Topps Attack cards if he got it. I try not to bribe him but in this instance it worked. Good Luck!!
Comment by Tracy — May 8th 2010 @ 5:34 pm
Hi Gregg- I thought you weren’t supposed to cut the pill up? Do you cut it? He is having such a hard time

Thanks to all for your ideas…keep them coming

I’ll be trying the mint idea too, Tracy! Thank you!
Comment by Melissa — May 9th 2010 @ 11:36 pm
I was told you can not cut or crush the pill. The higher dosages are larger pills and my son wasn’t able to swallow them in things like peanut butter or pudding so trianing him to swallow the pill was our only option.
Comment by Tracy — May 10th 2010 @ 9:17 am
Intuniv is a time release. As such, you’re not supposed to cut or crush it. If your kids have a hard time swallowing a large(ish) pill, try this:

http://www.raising4boys.com/20.....arge-pill/

Just set it on a big soup spoon and cover it with chocolate syrup. The syrup masks any flavors associated with the pill and makes it slippery and easy to swallow.
Comment by dad — May 10th 2010 @ 9:30 am
After reading this article, I’ve had higher hopes of taking the Intuniv meds my doctor prescribed for me a few hours ago. I feared that they may hinder my performance in school or elsewhere and I’m really nervous about them harming my health instead of getting rid of my tic (excessive blinking). I’m 15 and my tic started in late November so my family decided I’d wait a while before trying medication, but now it’s time that I do and I’m really worried that the side effects will appear. I know this is a new medication so does anyone have any info on it? I was extremely horrified when I read that Intuniv is for ADHD because I don’t have it as far as I know. Is it helpful to teenagers that only possess a motor tic?
Comment by Lisa — May 10th 2010 @ 6:58 pm
Lisa, You should feel comfortable with our decision whether you choose to take the medications or not. If your excessive eye-blinking is causing you emotional pain or hindering you in other ways then I believe trying the medication is beneficial. My son has both motor tics and adhd. Since he has been on the Intuniv his motor tics have all but gone away and yes he has become more attentive and focused at school. Are there side effects? Yes. He is very tired and often has to nap when he gets home from school in order to do some after school activities such as baseball. As a parent I struggled for a long time whether I should give my son medication and am sure your parents have struggled with this idea as well. It is not a decision that is taken lightly either by parent or child. Good luck to you. I wish you the best and think that you are a very brave person for reaching out and asking for help with this very big decision.

Sincerely,Tracy
Comment by Tracy — May 10th 2010 @ 8:34 pm
Tracy, thank you for the support. I need it.
I’m glad to hear that you’re son has done better with the medication. The tic subsided today after taking the medication last night. I just took my second one a moment ago before reading your post. Intuniv really does seem to help! I got really tired after using it but the doctor told me to not take naps after school but I guess it’s different for everyone. Thanks again for the support and for sharing your story. I appreciate it.

~Lisa
Comment by Lisa — May 11th 2010 @ 9:01 pm
Lisa, I was so happy to read your post and hear that the medicine is helping you. Good luck. Feel good. I wish you the best. Tracy
Comment by Tracy — May 12th 2010 @ 8:29 am
Thank you all for your comments on this site.

My son is 12, diagnosed with OCD, Turrets and ADHD. We tried fluoxetine (prozac) for about a year or so and it did not seem to help much at all with the OCD and seemed to increase the Turrets and ADHD symptoms.

So we stopped the fluoxetine.

About 3 weeks ago we started intuniv. No results from 1mg, but started to see some relaxation of the tics on 2mg. We started 3 mg. about 2 days ago, but he is now complaining of stomache ache, cramps and nausea. We are going to move him back to 2 mg.

We are then going to try something else for the OCD, since his OCD symptoms and overall anxiety seem to have increased with the increase dose/effectivness of the intuniv.

Any suggestions? I see some folks have tried Lexapro and abilify. How about Zoloft – that is what my son’s psychiatrist is prescribing now for the OCD as of today?

Dana
Comment by Dana — May 21st 2010 @ 10:25 am
My son is ten and has been taking Intuniv for a month. He is currently on 3mg because when taking 4 he was more like a zombie than a ten year old boy. He has been prescribed this for a facial tic where he raises his eye brows and rolls his eyes into the back of his head. My concerns are how and adhd medicine is effective for tics. Are they related? He seems to be a normal kid to me. Im also wondering how long it took to see significant results after starting the meds. Like I said, its been a month and I havent seen any changes in his tics, just his sleeping habits. Any experiences and info on this would be great.
Comment by Toni — May 25th 2010 @ 11:36 am
Thanks for all of your posts. My 7 year old son has ADHD and developed bad facial tics on focalin and ritalin. The tics went away once he stopped taking these medications. He started 1 mg intuniv a week ago. Within four days the facial tics were back and just as bad as before. He was very tired as well. We started 2 mg yesterday and the tics seem more mild today. I am just wondering how long it takes for the intuniv to start to work on the tics and if it is normal for tics to maybe be expressed more when the child is over tired.
Comment by Di — May 31st 2010 @ 5:55 pm
My son takes Adderall, Intuniv and Zoloft in the morning, Adderall at noon and Clonidine and Luvox in the evening. He tried Intuniv at night but it kept him awake, which is different from what others have said. He has been diagnosed with ADHD, OCD, Tourette’s and Anxiety Disorder (from age 5-7). He is 16, and last year he commented that he thought maybe he had Aspergers which shows his own awareness of his symptoms. I was talking to the grandmother/guardian of his first friend in years, and we both realized that since our boys started Intuniv, they were able to make a friend. The last friend my son had was in middle school with an extremely hyper child who ended up moving. (he had become friends because as he said “Mom, I found someone who is more hyperactive than I am!”) I don’t worry as much with this new friend because they seem to be able to get along much better. I had tried to take him off his midday Adderall for the summer, but when he threw a pair of scissors against the wall trying to kill a bug the other day, I reconsidered. Tomorrow I head to a presentation by the Office of Civil Rights on educational issues so that maybe I can get a better 504 plan for him for his last two years of school. Now that is a whole ‘nother matter!! Oh and by the way, hubby has ADHD and was unmedicated for years due to high blood pressure, but now takes Vyvanse, which cuts down on some on the hyperactivity- not all of it, but some. It’s still better than it used to be.
Comment by Nancy — Jun 4th 2010 @ 11:34 pm
I recently took my son off Focalin xr 10mg. He took it with Intuniv 2mg. He is 6 1/2 and was showing signs of ocd behaviors and anxiety. He also appeared very depressed. I started to worry thinking, uh-oh, this is what everyone is talking about. However, something told me (instinct) that it was the Focalin xr. It is my understanding that stimulants can cause these unwanted behaviors. So I took him off it and I can not tell you how well he is doing. I have my baby back. The side effects of intuniv are drowsiness. This wore off after time. It was scary at first, but i held out. He is so happy! And so am I!
Comment by Melissa — Jun 5th 2010 @ 1:41 pm
We started with the Intuniv as our first line of medication. My son showed signs of improvement almost immediately on 1 mg and even better on 2mg. We decided to keep him on 2 mg but now we are seeing some tics return as well as some impulsive ADHD behaniors at home after about a month or so on 2mg . He appears to be doing well at school as the teachers have not noted any worsening of behavior. He is going to sleepaway camp and we have decided to take him off of meds for the summer and restart when he returns. I hope to keep him on the 2 mg for a awhile when we restart but am having concerns about the return of the tics and behaviors at home. Has anyone had experience with the lower dosage of 2 mg for extended use (I know many kids are on 3-4 mg)?
Comment by Tracy — Jun 5th 2010 @ 8:44 pm
My son only takes 2 mg Intuniv in the morning. At 16, he is a little more responsible for taking his meds, and neglected to tell he to refill his Intuniv and was off for a while. He got some dramatic tics lately, so today was the first day back on Intuniv and I am hoping to see a lessening of that. He has an all week institute at a college this coming week, so he needs to stay on his meds.
Comment by Nancy — Jun 5th 2010 @ 8:51 pm
All the info on intuniv has been helpful. Our 11-year-ol daughter with ADHD and a perhaps PDD-NOS has been on the medication for about a month. In addition, she takes Prozac in the morning. When the intuniv increased to 3 mg; she was very unhappy — unable to sleep, whiny most of the time, and very oppositional. We cut her back to 2 mg taken between 7 and 8 p.m. She seems able to sleep again (with the help of melatonin) and much improved in certain behaviors. She does not need to yell all the time and is slightly more reasonable. Her tics are not noticeable at all. Currently, she does not take any stimulants.
This medicine is very difficult to get on board, but seems to be quite helpful. Good luck to all of you; you may have to work on the admin time to get it right for your child!
Comment by JaLynn — Jul 2nd 2010 @ 12:48 am
Jaylen- maybe take the Intuniv in the AM with her Prozac (thats what we do) he sleeps much better this way. When we increased to 3mg he was much like your daughter but it passed in a couple of weeks, he also was sleeping in the AM at school, but it passed as well.
good luck

I have a 11 yr son PDD-NOS, OCD and Exp Laung Dis. His tics have been hand flapping, finger snapping, hair twisting, spitting, licking his lips till raw, and currantly picking the skin on his fingers till they bleed…Maria, is this something common with kids? I dont think so! Im not talking about the occational flip and pick here. Im talkin about excessive, all day long!! We started Intuniv in Oct of 09. We have seen a lot of improvement with his behavior at school and home (more tolorent etc..) He also takes YES, Prozac for anxiety/OCD, and during the school year a small dose of Concerta for focus. Being a parent of two children, one of which is 18 and is completely “normal” (by Maria’s standards) and will be attending Texas A&M in the fall…Maria, why are you even on this sight ?? If your beliefs are to “let children be children” then why are you here? Maybe your here because you are uneasy about your own children. When you have a child that has issues the most important thing to do is to realize that they are NOT normal and need all means of help available thru therapy and yes even meds. This is the biggest hurdle for us as parents. So ask yourself, Maria? Why are you hear amongst us, Bad Parents? Also, if your child had cancer or a physical sickness would you deny him/her medication??
Just askin

Good luck to all, keep posting
Kathy
Comment by Kathy — Jul 9th 2010 @ 8:00 pm
My son never could sleep when he took Intuniv at night. Now he takes it in the daytime, and for the first time in 16 years, he has a couple of friends who he actually goes to their house and plays with. I’m so glad I didn’t let him “just be a kid”, Maria. He would’ve gone all through school without one friend. And you must not have ever seen any of the tics some of our kids have. Nicholas had one where he would swing his arm up high. He would try to hold it down, but it took too much effort. He looked like when someone tries to imitate the trunk of an elephant.

And I would rather suffer embarrassment (which I really don’t but which you implied we should) by giving someone information that they can use. Hey, you think this is bad. Come to one of the spina bifida groups and I will give you the rundown on my daughter’s bowel management program!
Comment by Nancy — Jul 9th 2010 @ 8:57 pm
Hello to all!

Is anyone experiencing restless legs with Intuniv? Wen my little guy goes to bed, he said his legs, “won’t stop moving!” He had this prior to taking Intuniv…this just recently started again. Hoping it’s not a side effect. However, I do know it is common in ADHD children.

Well, it’s been 2 months since we have been on Intuniv and all I can say is WOW! He is on 2mg and no other meds at this point. His focus isn’t as it was when on a stimulant, but his behavior is out of this world! He is so happy, compliant and rational. He no longer exhibits anger, aggression and irritability. As far as the focusing piece, summer is here and he doesn’t need it for school..so we will se how he does in the Fall. However, I am hopeful that we can teach him the skills and strategies needed to remain focused with out the stimulant. He is willing and compliant now, so I know he will try it because he won’t “fight” it. We did have to give it to him in the evening due to sleepiness-thank you Shannon for that tip!

I was reading something that I thought I’d share re: stimulants. We did not do well with the two we tried (at different doses and combos) Aderall XR and Focalin XR (w/ Intuniv). He started showing signs of major anxiety, withdrawn, depression and OCD behaviors. Stimulants can cause these side effects. I know that is a “no brainer” but I felt as though treating those symptoms just so the side effects would go away was going about it all wrong. So I took him off the stimulants(mommy’s intuition) and stuck with just the Intuniv. i plunged through the initial side effects of him being sleepy and stuck it out..for I heard the rewards were worth it. Children with ADHD have a deficit in working memory. It is my understanding that Intuniv (over time) builds up the working memory while stimulants are short acting (meaning in and out of the system). My son was having difficulting in reading (he’s heading inot 1st grade) remembering the sounds in C-V-C words. Eg. the word “cat” He knoew the sounds in isolation, but when asked to blend the word he would take the last sound ‘t” and say “top!” because he could not remember the first two sounds. After two months of being on Intuniv, He is now successful with this deficit that Intuniv helps build. Yeah!

By no means if stimulants are working for your children am I saying to forgo it, but it might be worth the try to see if they could do without. ???

I just wanted to share in the success we are having.

Look forward to hearing from everyone!

Melissa
Comment by Melissa — Jul 9th 2010 @ 8:58 pm
Nancy- yes our son could not take it at night and once we moved to morning it was fine…We too had most serious tics…our son reminded everyone of a lobster, constantly snapping his fingers from the time he woke up in the am till bed at night…the only time he does not tic is when in the vehicle moving down the road ? always puzzled me…is it a movement stimuli??

Melissa-yes my son complains of his legs at night we give a small dose of ibuprofen before bed…helps alot…idk if its rest leg or just growing pains…i know with my son, pains are a lot more bothersome than with my “normal kiddos”

have a great weekend
kathy
Comment by Kathy — Jul 9th 2010 @ 9:54 pm
my daughter is 4, she has adhd and sid. I hated the thought of putting her on meds. but after two yrs of intense therapy special schools it finally came to it. after lots of talked with the doctor and research we chose intuniv. she has been on 1 mg for going on three mths, I love love this medicine. she doesnt have that spaced out look, or any sides effects. for the first week she did fall asleep if she sat still but that when away. however, as anyone had their children on this medication for awhile? did they start to not work as well as before? did u have to up it or change it? since she is so young and i am not a fan of drugs i dont want to up it unless that is needed. her impulsion to be violent have come back. her screaming instead of talking have come back, her hiding and emotional roller coaster are back.. nothing like without meds but they are there. she isnt trying to hurt herself yet again. thanks and God bless us all..
Comment by danielle — Jul 10th 2010 @ 4:03 am
Yes I found that my some of my son’s ADHD personality traits seemed to come back after a while on Intuniv but not as severe. We have maintained him at 2 mg and am hesitiant to go up as of yet since he continued to do well in school.
Comment by Tracy — Jul 10th 2010 @ 12:56 pm
Hi Danielle,
On 1mg it was great at first, but we did have to increase it to 2mg. In an effort to offset the sleepiness side effect, we give it to him at night around 7:30. I read that it’s full effect works after 12 hours…so taking it at night seems to be the answer for two reasons. Due to this, you may want to try giving it to her at night (1mg) before you move up to 2mg to see if there is a difference. It sounds as if her re-current symptoms warrant an increase and 2mg might be the next thing to do. I feel your pain re: not being a fan of meds, but it sounds like you found the right one and it just needs to be “tweeked,” as all of these meds do. I often remind myself that they are suffering, and if he was diabetic, I’d have to increase insulin if needed…

Support groups are the key to helping “us” through this. On Facebook there is a great page…a mom’s view of ADHD that is a great way to connect to other parents and learn important info. She also has a blog that you can connect to via Facebook. I am also setting up a blog myself..Living and Loving Life with ADHD…

Hang in there!
Comment by Melissa — Jul 10th 2010 @ 1:40 pm
My soon to be 6 yr old son has OCD (he was diganosed with P.A.N.D.A.S. – an allergic reaction to the antibodies from strep throat which can bring on OCD and tourettes in predisposed kids), ODD and ADHD. He has been on 25mg of Zoloft to control the OCD (a miracle drug for him) and we have recently begun trying ADHD medications. His ODD (oppositional defiant disorder) is overwhelming us – and the stimulant medications seem to exacerbate the symptoms. Yesterday our doctor prescribed Intuniv for his ADHD and ODD. This is the first medication I have seen that claims to help with some of the more pronounced defiant disorder symptoms.

Has anyone else seen an improvement of ODD symptoms with Intuniv?

Thanks!
Comment by Rachelle — Jul 10th 2010 @ 3:36 pm
Rachelle,
Yes! Yes! Yes! My son has ODD and he no longer exhibits these behaviors. It’s been 2 months and he is doing great. Hang in there with it..it will be worth the wait as his body adjusts to it. Give him meds at night for it makes them sleepy at first. My son is on 2mg..started at 1mg. Good luck.. keep me posted!
Melissa
Comment by Melissa — Jul 10th 2010 @ 5:58 pm
So much information available, but found this site to be very helpful and encouraging. Maria’s unfortunate and uneducated post did throw me a bit, but will continue to read for support and education from people with shared experiences.

After too many negative parent-teacher conferences and an increase in tics during the past year, my 8-year old son was diagnosed with Tourette’s and ADD. Like so many, his tics are more pronounced during stressful times (which for him is often in social situations) and his ADD more obvious while in school. He started Intuniv four days ago (1mg at night), and though too early to know the long-term results, he is feeling calm and relaxed. I am a little concerned about the sleepy side effects. We went to the park yesterday and he didn’t have much energy. He has also napped each day, which is not normal for him!

I had hoped to help him without medication (behavior modification, meditation, healthy foods, vitamins), but the reality is, he has a neurological disorder and to postpone medical assistance any longer is doing him a great disservice. Like yours, my child is a great kid with endless potential and opportunities. Letting “kids be kids” is a wonderful mantra, but I prefer not to just let him be and hope it all works out. He is counting on me to navigate for him until he can do so on his own.

Thanks again. Hoping the best for us all.
Comment by Natalie — Jul 11th 2010 @ 10:57 am
All,

Thank you so much for sharing your stories. Our 7-year-old son has Tourette’s Syndrome and ADHD, and we recently made the (very difficult) decision to try medication, when therapy alone was not enough. We have just moved up to 3 mg of Intuniv, and I’m wondering if any of you at that level saw an increase in aggression and mood swings in the very early stages of taking the drug. Our son is not normally aggressive, but lately he has been very hard on his younger sister (nothing physical), and then he sobs because he feels so bad about yelling at her. The Intuniv is helping a lot with sleep, and the ADHD symptoms are much better, but we need to know if there is a light at the end of the emotional tunnel — 7 is too young for such angst!

Thanks for any help you can offer.
Comment by Heather — Jul 11th 2010 @ 1:49 pm
My son, who just turned 11, started Intuniv, 1mg, middle of May. It was a miracle drug for us at first. He is very defiant and miserable most of the time, always angry and hateful. Intuniv was the most wonderful drug and made everything just so perfect. Now it has stopped worKing! He is up to 3 mg, 2 at night and 1 in the am. Before I stop, tomorrow I am going to reduce the dose to 2 mg at night, and see if he has any mood changes, if not I will discontinue the meds. I don’t want to give him anything if it doesn’t work! Stimulants aren’t the answer for him, he bounces off the walls. I just want him to be happy!
Comment by Marisa — Jul 12th 2010 @ 4:19 am
I have a ten yr old. He has been on Stratera,Concerta,Ritlin then back to Concerta. He was diagnosed in first grade and i didn’t want to put him on meds, I chalked it up to him being a early starter(he turned 5 three months before kindergarten) he suffered through kindergarten, his teacher separated him and made him stand out which made all the other kids think he was “trouble and aggressive). This has been a struggle ever since, if it wasn’t for his counselor I wld have went crazy!
Anyway he got a new Dr. and the Dr. put him on Intuniv because I explained even with the Concerta his homework was failing he was forgetful and he had tics that wld come out, and it took him an hour to go to sleep.
He now sleeps better(he is currently on 2 mg) and he does get drowsy but it happens around 830, hes not a zombie during the day. He will start on the 3mg this Wed. although he says he likes the 1 mg better.
Please keep me posted everyone about the Intuniv, something has got to help him.

As for Maria, what the heck?! I have you know my son does not under any circumstance act “out of it” at any point in time besides bed! He IS all boy right down to going outside and riding his bike and swimming and running around ALL DAY. I am assuming you don’t have a ADHD child so please don’t pretend to act like you know what we are going through! If my son didn’t need meds believe me he wld be OFF of them, I am looking forward to the day his symptoms decrease.
Comment by samantha — Jul 13th 2010 @ 3:49 am
This is a helpful website. My son has ADHD and Tics. We recently started Intuniv and increased the dosage to 2 mg this week but I am seeing some OCD thoughts and some sadness. He has always been alittle hypochondriac worrying anything will cause him to die etc. Now I see those thoughts alot. I will be engaging him in therapy soon. Has anyone else seen sadness or depression with Intuniv or an increase in these thoughts?
Comment by regina — Jul 13th 2010 @ 8:33 pm
My 8 year old has been diagnosed with Tourette Syndrome- he suffers from tics, ADHD, auditory processing disorder. The tics probably bother me more than they bother him- but the ADHD is what is going to affect his life learning. He also has difficulty in word finding and expressing ideas. He is currently on vyvanse, but not sure it helps much. we are on year round school, so he just started 3rd grade on friday. Obviously, tics are increased now due to school starting, but would love some feedback/advice about intuniv or straterra?? Also, I am in the process of watching a 3 hour lecture on the TS association website by Dr. Walkup- this is awesome! He is wonderful!! Any others advice, welcome.
Comment by Heidi W — Jul 13th 2010 @ 10:00 pm
Regina,

We are seeing sadness/depression with our 7-year-old, who has been on 3 mg of Intuniv for about a week. The medication is helping him sleep, and his ADHD is much better, but it’s never been so bad that it would be worth trading for depression. We are trying to reduce his anxiety, not increase it! Has anyone else out there been on Intuniv (only) for longer than a few weeks? What’s the long-term prognosis? Thanks…
Comment by Heather — Jul 13th 2010 @ 10:01 pm
Hey yall!
I’m so glad I found this discussion board on accident (while attempting to research intuniv studies).

My mother and two sisters (as well as extended family) suffer from extreme mental / physological disorders and I have seen the absolute benefits that medication can have. I’ve also seen the flip side for those in my family that refuse treatment. I’ve also seen the frustration of not being able to find that magic coctail that’s just right. I thank God I have been blessed to only have OCD and slight ADD, both of which I manage without medications.

My daughter is acedemically acheived having been placed up due to her abilities and has always been a very social child. Her self-esteem is high (quite possibly too high at times, lol) and she doesn’t have difficulty maintaining lasting relationships.

Since age 2, we knew she was going to be high-strung and just downright stubborn. She has always been ultra-sensitive although behavior is never a big problem at all…in fact we are complimented often on how well behaved she is!

My daughter is now 9, and officially diagnosed with OCD (my fault, lol), ADHD (again my fault, lol) and tourettes. I have always been the “if it isn’t bleeding, you’ll be fine” type of mom so all these sudden diagnosis were hard for me to take.

For the past few years we noticed little “kwirks” that were noticable but not necessarily concerning. The past year, however, these became less kwirky and more alarming. The sleeping ussues, her inability to sit still, her finger snapping, her mouth tingles, her clinginess, her inability to focus and her “need” to talk (we’re talking about HAVING to say whatever just popped in her head-even something of no importance like “yeah” and if she can’t say it, freaking out like a kid that’s being told they have to wait to use the restroom).

I did not seek medical attention for anything other than her excessive sleepiness (again, my theory that if it isn’t bleeding, it’s okay). Turned out she had contracted lime disease and we went through months of treatments before the tests finally came back inactive! Woohoo! She was placed on Concerta as a temporary solution to the extreme fatigue that was expected to last for several months. Sure, all her little things were still there but I wasn’t worried a bit. I treated these as any other “kwirks” and behavior issues.

After a horrible morning one day before school, I “penalized” her for her lack of focus in getting ready, her irresponsible behavior and for having a complete meltdown. I scolded her for not appreciating me and instead of walking her to the doors at school (our usual routine), I made her walk the cross-walk and go in by herself. This, I thought, would teach her to appreciate that I’m always there for her. I truly wanted to vomit, watching her nervously rush along the sidewalks, looking like a scared puppy but I insisted that it was necessary for her to see what she could have to do everyday if I weren’t there for her. **I know I sound like a terrible mom at this point but I figured other kids do it so it can’t be that bad**

Filled with guilt, I came up to have lunch with her and immediately noticed severe eye blinking- to the point that it was painful to watch! Her teacher said it had been happening all morning and the nurse thought it was allergies. I knew it wasn’t although I took her to her allergist that afternoon. I knew I had pushed her too far out of her comfort zone and something was terribly wrong. The blinking got so bad that she was literally having issues seeing! After months of specialists and appointments, we finally got two drs that individually told me they thought she had tourettes/adhd. We had two professional opinions and both diagnosed her with OCD/ADHD/Tourettes. Turns out after just one session, my daughter openly admitted that she felts like every time an adult came near her, she was always going to be kidnapped. Her obsessive thoughts even tricked her into thinking that unknown kids may be getting close to her in an effort to trick her into being comfortable so an adult could grab her more easily! I was taken back?! All this time I’d been annoyed that she would get so clingy in public (including at age 5 to NOT sit with santa) and it was because she thought she was going to be abducted! I feel so guilty, still, like I made her crack. I wonder if I hadn’t been so damn hard on her that morning, if she wouldn’t be suffering so much with all these tics! I know it was inevitable but it’s hard to see her blinking and twitching and popping and knowing it was never that bad until I put her in her worst nightmare situation! Since then, ALL tics have increased and others were noted by her doctors – including her year long “allergy cough” that could never be relieved with meds…turns out that’s an auditory tic she had and we just didn’t know it… It also turns out that her exhaustion was not the lingering effects of the lime disease but due to stress of hiding her obsessive thoughts and “embarassing” tics! We took her off the Concerta and never looked back!

She was placed on Zoloft for the OCD which has helped her greatly (in addition to behavior modification exercises) and because of the severe tics, she was prescribed intuniv 2mg yesterday. I have high hopes for it…

The only thing that helps me through the greif and guilt is knowing that out of the drama, came the truth…she isn’t hiding anymore… She doesn’t feel like she’s pretending to be “normal” -

Of course I had to get over my own pride and deal with “okay, she has this” – that was big for me. But after I realized this is real and she really, truly isn’t wired right, meds were not a big decision.

If she had cancer, I’d medicate her in heartbeat…a broken limb, immediate surgery, etc. This is the same thing. Of course I’m not blinding giving her meds without research but I do not struggle with my decision, nor do I feel the need to defend it. She’s sick- she needs meds- period. No one would question me if she had a life-threatening illness, and in fact, that IS what she has. When her uncontrollable actions begin to define her, it IS taking her life. When her fears debilitate her, she is not just being a kid- she’s becoming handicapped. I am medicating her so she CAN “just be a kid” instead of being trapped inside.

~vanessa~
Comment by Vanessa — Jul 14th 2010 @ 8:00 am
I hope that post didn’t come across negative. It is not my intention at all – it’s just so thoughtless for someone to judge us for saving our childrens’ lives. That IS what we are doing…saving them from themselves.

I take blood pressure medication and I’m considered to be responsible but someone finds out my daughter is on meds for biochemical “disfunction” and now I’m a bad parent? I can’t even be mad about that- that’s just pure ignorance!
Comment by Vanessa — Jul 14th 2010 @ 8:13 am
Vanessa, I had to smile at your “have to talk” comment. My 16 year old son is actually proud of an award he got in English last year (everyone got something). His was “Most Random Comments”. But despite that, most people who meet him, if they can look past his hyperactivity will say how smart he is, so I guess some of his comments aren’t so random after all.
Comment by Nancy — Jul 15th 2010 @ 7:19 am
Not a negative post at all, Vanessa; thanks for the honesty. The recent diagnoses of my son’s ADD and Tourette’s has caused some guilt and sadness because I punished him for behaviors out of his control. Intuniv has given us both a second chance.

For those who talked about the emotional change, my son began to experience a great deal of sensitivity shortly after he began the 2mg dose. A lot of apologizing for anything he thought he might have done wrong, tearing up if he thought he hurt my feelings past or present, etc. I talked to his therapist and her comments made sense and have helped us push through rather than quit the meds prematurely: children with ADD/ADHD are so mentally unfocused that when the meds begin to work and sort through the clutter and chaos, everything is clearer. Thinking is more fine-tuned, so the emotional responses are more fine-tuned. We just talk through and help him make sense of what he’s feeling and try to put things in perspective. He continues to have tics, though not as frequent or severe, but overall, he has a focus and calm when in social settings that is so wonderful to see!

Thanks for all the great posts.

Natalie
Comment by Natalie — Aug 4th 2010 @ 10:45 am
Natalie, What an amazing post. We had the exact experience with our son who has both Tourette’s and ADD. For years we blamed him for bad behavior only to find to that his ADD contributed to it. When we started him on Intuniv his behavior was completely different and I haven’t looked back since. We are so happy to have made the decision for him and for our family. Tracy
Comment by Tracy — Aug 4th 2010 @ 11:59 am
Hi! thank you all for your posts! Natalie and Tracy, is Intuiv the only med your kids are taking or are they on a ADD med also? our Vyvanse sometimes works, but he still has bad days of focusing!
thanks for any feedback!
Heidi
Comment by Heidi W — Aug 4th 2010 @ 12:13 pm
My son recently got an offer to go to a better school. He said “no way, I have friends at school.” I never thought I would hear that!
Comment by Nancy — Aug 4th 2010 @ 2:17 pm
Heidi, My son is only on Intuniv right now. Tics have mostly subsided and attention improved. He does have some break through behaviors but overall a vast improvement. Tracy
Comment by Tracy — Aug 4th 2010 @ 6:40 pm
Hi All, Thanks for all of your posts and encouragement! Heidi, Nancy and Tracy. My psychiatrist said to wait and give the Intuniv a shot with the new therapist and lo and behold, the therapist has helped him talk through his anger and OCD stuff. The medication is definitely helping and his thoughts are clearer, he does not linger in a bad mood now and rebounds really quickly. No one wants to put their child on medication but when you see the benefits we cannot forget that we are helping them help themselves, its for them and their own peace of mind as well.
Comment by Regina — Aug 5th 2010 @ 12:45 am
Regina, That is do very true. We spend so much time feeling guilty about putting our kids on medication yet the overall benefits out weight any guilt we can ever feel. I have spoken to many parents in the same position and all have the same response. It is the best thing we ever did for our children. Those who judge haven’t walked in our shoes or our children’s.
Tracy
Comment by Tracy — Aug 5th 2010 @ 12:49 am
I’m glad your kids were able to push through the sensitivity issues with the Intuniv. We talked to our therapist and the pediatrician and ultimately backed our son’s dosage down to 2mg; it seems to be just right. His focus isn’t perfect, but whose is? There is absolutely none of the depression now, and he sleeps soundly for 10 or 11 hours each night. He jumps out of bed in the morning, gets dressed, fixes and eats his breakfast and reads or watches TV — usually all before I’m even up yet! He has never been a morning person, but it seems clear now that he just never got much restorative sleep (I actually spent the night in his room a few times to test this theory before we started the medication).
He has never taken anything for the ADHD, because we don’t want to increase his Tourette’s tics, so Intuniv is the only thing he’s taking.

Thanks again to everybody for your great feedback. I was pretty disappointed that the “support” promised by the makers of Intuniv seems to be missing, so I have really leaned on those of you willing to share your stories.

Heather
Comment by Heather — Aug 5th 2010 @ 12:50 am
Heather that is great news that you have figured out the best plan for your son! It is trial and error in the beginning. My son’s tics seemed to increase at first but now they seem alittle less, they always come and go as tics do. My son was never a good sleeper!! I now have been giving him melatonin at night only 1 mg seems to work and he needs it even with the intuniv. It has worked for us. My friend is having such a problem with increasing her (11 year old) son’s Intuniv due to the insomnia. She can’t get it to work. They have him on 1 mg Intuniv then 1/2 mg Tenex at night and she has tried the Melatonin, doesn’t work.
Comment by Regina — Aug 5th 2010 @ 8:39 pm
Regina, our son has run into some difficulty falling asleep, but STAYING asleep has become so much easier, we decided to adjust. We try to give him the Intuniv a couple of hours before bedtime, and if he’s still not sleepy at a reasonable hour, we don’t make a big deal out of it (which is not really our style!). We found that if we don’t focus on the clock, and let him read or watch something sedative — like baseball or the Home Shopping Network! — he gets tired soon enough. And then he sleeps solidly for 10 or 11 hours. Gradually, he has been getting tired earlier and earlier. I struggle with insomnia myself, and I think I get so hyper-focused on it that I cause myself even more problems. I’m trying to help my son learn from my mistakes. We’ll see.

By the way, what else is working for you all? Our son has been taking tae kwon do for about six months, and I think it’s been really helpful. Also, I just heard about something called rhythmic movement therapy, and I’ve noticed lately that my son finds our backyard swing very soothing. Anybody else?
Comment by Heather — Aug 5th 2010 @ 9:58 pm
Thanks Heather, that is great advice, I will pass it along to my friend. I just know that being a morning person myself, by nighttime I am exhausted so his not getting sleepy is very difficult. I think he is adjusting to the 2 mg and we may have to up the dosage. We are going tomorrow. Judging by the way he is jumping up and down right now on the mini trampoline after a day of camp, starting at 7:30 til 3:30, swimming, tennis, playing in the sun and he is still jumping, I think he may be adjusting to this dosage! He is the love of my life though. We all cope with so much. It is helpful to talk to other moms about it!
Comment by Regina — Aug 5th 2010 @ 11:20 pm
Sorry for the delayed response, Heidi. Yes, my son is only on Intuniv and it has been great for his ADD. We had a “honeymoon” period the first week while on 1mg dose, but when the constant, repetitive tics began again and ADD behaviors crept back, we increased to 2mg.

Because drowsiness is a potential side effect, he took the med an hour or two before bed. The reverse happened and he was unable sleep much at all. When he did, he had unpleasant dreams and was just generally off-balance.

I made a trial change and we began morning meds two weeks ago. Though it’s a 24-hour timed released med, he seems to get the best benefit during the day without tics and sleepiness. At night, he’s tired and goes to sleep very quickly and stays asleep. Without restorative sleep, it was hard to tell if it was really working. So far, Intuniv (and the time of day) does work.

Best to all.
Comment by Natalie — Aug 21st 2010 @ 10:24 am
my 11 yr old son just started INtuniv 1 1/2 weeks ago for adhd.. we just started the 2mg and i noticed tics. he has never had facial tics before…can anyone explain this to me?
Comment by kristie — Sep 6th 2010 @ 1:38 pm
My son (age 7) started using Adherral 3 months ago for ADHD. We took him off of it over the summer and started it up again a week ago. Both times after starting it, he started having tics with weird eye movements and blinking. My manager at work has a child who has ADHD as well. She tried a number of medications (Adherral, concerta, some others) with her daughter and they all helped the ADHD slightly but not enough to keep her out of trouble at school and home. About 4-5 months ago, she started trying intuniv and says the change has been incredible, for the good. Friends and family even commented to her over the summer on how her daughter seems like a different person (attentive, eating, growing). My wife and I are currently at the state of stopping the adherral for a few weeks and will be going back to the pediatrician to begin trying a non-stimulant. I’m leaning towards intuniv myself and it is more comforting to hear other parents views and successes. Keep the information flowing.
Comment by Rob — Sep 11th 2010 @ 2:13 pm
i loved the change my son had the 1st week on Intuniv..like a normal boy… and by switching him back to the 1 mg i still had the nose scrunching tics and now with him being off it completly i still see them but not so often. i am wonering if he had them all along and i didnt notice or by messing with all these drugs he got it(if that is possible)and i know exactly what you are saying Rob when you said it was just not enough being on concerta ,adderal ect… i had the same issues.. but now i m starting to think by giving my kid all these different medications to find one that works i am turning him into a gineau pig and i feel aweful.. i just want to find the ONE and be done playing around.
Comment by kristie — Sep 11th 2010 @ 6:42 pm
Stick with Intuniv…it is the best thing we ever did for our son. We have gone through different meds at different doses and combos. Intuniv alone has been a miracle. It’s been since May and it keeps getting better and better. I have been with him ALL summer and I am seeing the full benefits of this med. No more stimulants (they caused unwanted behaviors, twitches, ect.) Intuniv is supposed to help with tics. Strange that they would cause them..could be from coming off of stimulants or combo of stim and Intuniv?
Comment by Melissa — Sep 12th 2010 @ 3:35 am
We have also seen success with Intuniv. We are at about 90 days, 2mg. 3mg was too much; the med is a depressant (normally for blood pressure, I think), and it did just that to our 7yo — depressed him. At 2mg, he is focused during the day and can get restorative sleep at night. He has Tourette syndrome and ADHD, but we haven’t seen any increase in tics from the Intuniv. We’ve actually seen a slight decrease, although his tics have always been mild.

Hang in there, Kristie!
Comment by Heather — Sep 12th 2010 @ 11:26 pm
My son Ryan is 13, almost14, he has been on intuniv or For almost a year now .My son has been on Intuniv. My son used to be on clonidine, which is the fast acting product of intuniv. Clonidine was very inexpensive and made him soooo sleepy. Intuniv, the extended release version is very expensive without insurance. Why insurance companies and drug companies continue to market this old drug with such an exorbinate cost is beyond me. Many ER extended release drugs have come down in cost. I can only imagine that I am now just paying for massive advertisments and commercials to encourage use of this drug. Thank God we have insurance. Just wanted to encourage those who may expect instant results. This medication by my experience, takes about 2 weeks to really take effect. Please make sure to monitor bloodpressure especially while increasing doses. Side effects tend to go away, and tic’s seem to get worse especially during growth spurts, but go away after the growth spurt slows. He has done so well and improved so much on this medication. He is growing well, and his appetite goes up and down just like most children’s appetites do. He is normal weight and normal height for his age. He is currently on 3 mg and I don’t think going to 4 mg should be advised unless he gains more weight or his bloodpressure increases. He is 5feet 5 inches and weighs about 105 pounds. This is the best medication he has ever been on with the least side effects. His obcessive tendencies have declined, and he is much more calm. His confidence has increased, and he rarely even notices his tics anymore. His tics were substantial, including arm swings, severe head jerks, spasms of the face, clucking of the tounge and mild cussing. His obcessive tendencies have gotten soooo much better. We now can pick out an outfit to wear in the morning in 10 minutes. It used to take an hour. Anyone who does’nt recommend medication is insane. When you see your child with symptoms like this….. it breaks your heart. To the person who previously said don’t take medication…. please slam your head on the next wall and repeatedly shake your arms,roll your eyes, cuss, and make clucking noises for the next five minutes. I am a nurse, and a mother. I tried it so I could put myself in my son’s place. It was exhausting….. and i started medicine for him the next day. Other interesting facts…… I developed a severe thyroid disorder during my pregnancy and babies need your thyroid for proper developement. My son was born with toricollis and he did’nt walk till he was 2. He took adderall for ADD at the age of five. Most cases of Tourettes begin at around that age. I as a nurse took many hours and stabs in the dark trying to figure out just exactly what was wrong with my child. I always knew he was different from other children his age. Many doctors have told me that tourettes mimicks ADD at it’s beginning stages and that many ADD medications will bring out the tics faster than they would have come on their own. Many doctors will not know this drug, especially pediatricians. Letting them know that it is basically the same drug as clonidine in an extended release version will be very helpful with educating your physician in your needs. May your patience be great, and your love for serving your child’s need be strong. Follow your instincts mom and dad’s. All our love… Ryan and Heidi.
Comment by Heidi H. — Sep 17th 2010 @ 3:04 am
Thank you for your post Heidi. It is so important to support one another through this journey with our children. I just collaborated as a contributing writer with 5 other moms on A Mom’s View of ADHD blog in an effort to bring awareness and support to parents and caregivers. Inviting all of you to join in this journey together and check out this most awesome blog created by Penny Williams! Look forward to hearing from you there!
Melissa
Comment by Melissa — Sep 17th 2010 @ 3:42 am
Heidi, I find your post so interesting. Our 12-year-old, 75-lb daughter has been taking intuniv since the beginning of June. She had minor tics and many obsessive interests as well as ADHD. She could not tolerate 3 mg and did okay for a while on 2 mg through July and August, but had to cut back to 1 mg after school started because she was always low and slow. She especially complained about how heavy her legs felt all the time. I tried to get her fluid intake up to keep her blood pressure up, but low pressure runs in our family and she didn’t want to be in the bathroom all the time during the school day.
Comment by Jalynn — Sep 17th 2010 @ 8:38 pm
One other thing I am wondering is if anyone has tried combining Intuniv with Tenex in order to go to the in-between dosing such as 1.5, 2.5 or 3.5 mg? Since we’ve cut back on the dosage, our daughter has more ADHD symptoms (she also takes Prozac and 1 short-acting Focalin in the AM on school days). Thanks to all for your input.
Comment by Jalynn — Sep 17th 2010 @ 8:41 pm
Heidi, I don’t think Clonidine is the fast acting version of Intuniv. I think you are mixing that up with Tenex. Tenex and Intuniv are both guanfacine. Tenex did nothing at all for my son and yet Intuniv does. Go figure. According ot PubMedHealth, Guanfacine is in a class of medications called centrally acting alpha2A-adrenergic receptor agonists. Clonidine is in a class of medications called centrally acting alpha-agonist hypotensive agents. They sound like they may be in similar classes, but I don’t think they are the same. My son takes Clonidine to help him sleep. He saw an endocrinologist today for growth problems and the doctor said many of his patients report a “drug hangover” with Clonidine, which explains why my son cannot wake up for his first class, Honors American History and why his average is an F right now (don’t get me started on his teacher and the 504 plan!). I am going to try to get him to take it earlier this weekend and see if it makes a difference.
Comment by Nancy — Sep 17th 2010 @ 11:39 pm
We are 10+ weeks into Intuniv for Tourette’s and ADD. In certain situations, my son’s focus is much improved and the tics have greatly diminished. Unfortunately, his behavior at school is not his behavior at home and I will be going to my second parent-teacher conference in the six short weeks since school started.

His tics are increasing, he is talking out randomly, paying little attention to the teacher, making inappropiate comments, and just generally being a distraction in class. He has also received three discipline reports in two weeks for aggressive behavior. Football is his passion right now, but the behaviors are beginning to affect that as well.

Intuniv seemed to be our miracle and this return to old behaviors is sad for us all. Anxiety changes everything for him- more tics, less focus- but it seems the 2mg dose isn’t strong enough. I noticed a few children (7-8 yrs old) on this post have been prescribed 3mg…I was advised that he can only take the 2mg because the weight requirement for 3mg is 90 lbs. Thoughts or suggestions would be helpful.
Comment by Natalie — Sep 22nd 2010 @ 9:46 am
What is his weight? I know when my son was on Concerta he ended up taking more than was recommended for his weight limit, because that was all we could do. Is your son on additional meds because Intuniv is only one of many that my son takes? He also is on Adderall for ADHD plus others for other conditions.
Comment by Nancy — Sep 22nd 2010 @ 5:18 pm
Thanks for responding, Nancy. My son weighs between 60-65 lbs (depending on which scale). I did make an appointment yesterday to discuss the meds and his doc agrees that the 2mg is not working.

Because we did see an improvement for several weeks after starting Intuniv, she wants to try the 3mg before adding to or changing meds. Her thoughts on the 3mg for those weighing less than 90 lbs is the higher rate at which younger kids metabolize everything, including meds. She also shared that at a recent dinner meeting about Intuniv, the physicians with a large pediatric population find that the 3mg dose works best for their patients- across the board from young elementary through early teen.

I research everything I do in life to stay informed and to make better decisions for me and my family. This situation is tough because my child’s well-being is based on trial and error and the outcome is uncertain. I am grateful to have physicians I trust and others with whom I can share. Thanks to all.
Comment by Natalie — Sep 23rd 2010 @ 10:19 am
okay, we are on week 2- at 2mg. He is taking it at 8am. Last week on 1mg, he was extremely tired by bedtime but slept all night until about 5:30am. Now on 2mg, he wakes up for 2 hours from about 2 to 4am! And still wakes up at 5:30! Since we are on a year round school year, we are tracked out for one more week, but I cannot imagine him going to school without proper sleep. I have seen an increase in tics, maybe because he is tired and a little improvement in attn. My son has TS and ADHD. Should we muddle thru? does the sleeping get better or should I try giving it to him at night? Is it too early to change; can his body get used to this and his sleep change back to normal?
He has always been a great sleeper! HELP!
Heidi W.
Comment by Heidi W — Sep 24th 2010 @ 11:29 am
Heidi,

Our 7 yo son is also on 2 mg. He tried 3, but it depressed him, so we went back down, with the doctor’s OK. We have only tried the Intuniv at night, which is what the doctor suggested, although one of our main motivations for trying the Rx was that our son could not get restorative sleep. I would definitely talk to your doctor about switching to PM.
Our son also has TS and ADHD, and we have seen subtle but powerful improvements in his attention. His tics have never been too extreme, but even those have been reduced. I think you’re right about tics increasing without sleep, though. We saw even greater improvements in our son’s attention at 3 mg, but again, it depressed him. Your son may react differently. Our son once sobbed after taking Dramamine; it’s just the way his body reacts.

Hang in there! And keep your doctor in the loop. I think this is as new for some of them as it is for us.

Heather
Comment by Heather — Sep 24th 2010 @ 12:25 pm
I really believe you should keep going, Heidi. It does take time for the body to acclimate to changes, especially meds, and the length of time is different for everyone. We were advised to expect 3-4 weeks for full affect.

I shared earlier about the sleep distrubances my 8 year old son had on both 1mg and 2mg. Even though an early side effect was sleepiness, he could not get to sleep nor stay asleep when taking the med at night. With the doctor’s ok, I switched to a.m. several weeks ago and he sleeps very well.

We switched to 3mg this week because tics and ADD were increasing dramatically. I will watch for the depression, but am hopeful the 3mg will be his ticket to freedom.

Best of luck!
Comment by Natalie — Sep 24th 2010 @ 4:17 pm
Intuniv did not work for my son at night so he takes it in the morning. Wish us luck. He stopped the Clonidine at night and tonight we are trying the sublingual extended Melatonin (spray under the tongue) from the health food store. We made him go to bed at his normal time and usually he will interact with us a couple of hours afterwards if he hears us. So far all is quiet at 10:30. I will get him up his regular time in the morning to see if he stays alert. The Clonidine makes him have a drug hangover.
Comment by Nancy — Sep 25th 2010 @ 3:27 am
Just a note to all – Went to the Dr. Today. Ryan has had periods of increased movements lately and has grown quite a bit in the last few months. She really stressed to me that the hormones in puberty will decrease the effectiveness of this medication and that his growth will effect it too. Be patient mom’s . These things will happen. Your children will grow all over there body and I have noticed that once the growth spurts are over the medicine seems to work better. I am keeping track of these things on a regular basis. Attitude, appetite, expression, etc. I know it sounds bizarre to some, but this is a newer medication being used and I want to understand the scientific effects of it. Understanding this is so very important to keeping in the reality of this disorder. His appetite comes and goes, but right now he’s eating me out of house and home. Working with him every day is always a blessing and a suprise. He is so funny. He was being teased by a boy the other day saying “duh” to him and said a couple choice words by choice. Lets just say It was’nt his usual . I asked him if he got in trouble and he said ” no mom, I have tourettes,” I rolled my eyes , corrected him, and laughed inside thinking….. This kid is catching on….. I know you girls have some good grocery store stories….. I think we have offended at least half of the old ladies in our home town. Oh Well…….
Comment by Heidi H. — Sep 28th 2010 @ 3:24 am
Though I prefer my role models (and those of my children) to be of the real-people variety, I really enjoyed reading about Tim Howard, goalie for the US soccer team. He’s quite a gifted guy and Tourette’s is just a part of him. There is so much more to all of us than meets the eye, especially our sweet children.

http://www.timhowardstory.com/
Comment by Natalie — Sep 28th 2010 @ 8:57 pm
My son just started taken 1mg intuniv the other day, so for no bad side effects, he is sleeping well at night which is good, he is also taking medadate 40mg daily. My son TJ is 11 yrs old, just started the 6th grade. Does anyone have any suggustions on how to help him learn to study and to help him organize his binder for all his classes? He also started getting some facial ticks 2 months ago, they just seem to get worse, and he is being teased at school. My heart breaks for him. I stumbled on this site after looking for some info on the intuniv, I’m glad to read that there are other families going thru the same thing, when the school contacts you to let you know your son was being disruptive in school again..they make you feel like he is the first and only child to act this way. We have tried so many different medications, strattera, adderal, focolin, concerta, ritalin..you name it. He was diagnosed at age 3, he has been thru so much, I wish I knew what to do to make this an easier more managable thing to go thru. Reading all of the other comments from the parents on this site, has given me some hope and encouragment!
Comment by kristi — Sep 29th 2010 @ 7:00 pm
Discovery Health Show
http://health.discovery.com/vi.....uncovered/
Comment by Nancy — Sep 29th 2010 @ 7:39 pm
Hello, Kristi. It’s hard to read your post and not feel sad for your son…it’s such a common theme for us all at one time or another.

My son is 8 years old and was recently prescribed 3mg of Intuniv. The 1mg and 2mg worked for awhile, but the effectiveness eventually waned. His tics are still present when he is anxious- eye rolling and finger snapping especially- but fairly quiet the rest of the time. This is a big change from 3-4 months ago when he had several, continual tics.

Have you talked to his teachers and/or the school administrators? I didn’t want my son to be known for his disorder, so I chose not to initially. However, he was acquiring a reputation for being a distraction in class and his grades were suffering, so I sought school support. It turns out there are many kids in our school with ADD/ADHD and several with Tourette’s. The staff knowledge and experience has been helpful and encouraging. They have shared ideas about what I can do and the teacher(s) will provide additional assistance in class without setting him apart or drawing unnecessary attention from classmates. Not sure how it will all work, but we’re hopeful. Also, I recently heard about a book called Love and Logic…it’s an instructional program for parents and is supposed to be very beneficial for kids with ADD/ADHD. I haven’t read it, so can’t offer first hand reviews, but will be finding a copy soon.

Our school has a fairly stringent bullying policy in place, but kids will find a way to tease without getting caught. Consider discussing everything with teachers/staff and seek their advice. You may be surprised at what they have to offer.

Best wishes to you.
Comment by Natalie — Oct 2nd 2010 @ 10:10 am
I think it’s important to realize that children who are with your child everyday are impressionable, they are uneducated, and are inquisitive in the world around them. They are naturally drawn to the unusual, which in some cases… can be YOUR CHILD. I have played a video in my son’s class room for several years to his classmates and for the most part, chilren have become educated and see Ryan as any other child. Some have chosen to go their own way, and do tease. I have let my son know that he is free to express his feelings to those who choose to go there. He has to learn to fight his own battles at almost 14. He knows that most kids who do this have a pain internally that he does’nt have. Aderall and other ADD medication are published all over the internet as being stimulants of tourettes, ocd, and tics. My son was on Aderall and it was soon after that his tics started. First fine tics then great big one’s. OCD, and progressively worse by age 7.
Comment by Heidi H. — Oct 2nd 2010 @ 10:39 am
I have a 7 year old son with autism, who is currently on Intuniv. He is in a mild self-contained 2nd grade class, and does pretty well academically, although his language and social skills are somewhat delayed. I’m also a special education teacher (I switched from general education after my son’s diagnosis 4 years ago.)
This is my first foray in to the world of medication, and it’s been a long, difficult process. As it appears now, it is still ongoing. We started with a trip to the neurologist last June for a check-up and a discussion about OCD behaviors that were interfering with school. The doctor put my son on Zoloft and recommended we see a pediatric psychologist to address ADHD concerns. After seeing no progress with the Zoloft, the psychiatrist switched to Paxil to regulate the OCD. Right now, we’re only up to 15ml and still not seeing much improvement with the OCD behaviors. We were told we could go as high as 40 ml, but it’s a slow process. We added Vyvanse to treat the ADHD, but stopped it after a short run due to uncharacteristic aggression, both at school and at home. Thinking that stimulant ADHD meds weren’t for him, the doctor switched us to Intuniv. We started with 1mg and with each increase the story has been the same. Sleeplessness at night, drowsiness during the day, compliance at first at school and then behaviors returning. These behaviors include spitting, pinching, biting, and running from teachers. This week, I’ve had to leave my class to pick him up from school. (Don’t even get me started on my opinion on some special ed teachers-it’s a long story : ) )
Anyway, we see the psychiatrist tomorrow morning, and I think it’s time to switch ADHD drugs again. Intuniv is a non-stimulant and so was Vyvanse, so I hope the doctor has a good recommendation for us. I keep thinking the next drug will be the right one. We’ve been on Intunive for over 9 weeks, so I think, with amount of aggression we’re seeing in a normally non-aggressive child, this isn’t the one for us. My pediatrician suggested Strattera, and I’d love to hear other recommendations and what works for other folks.
I think what’s been really tough is that my son really can’t tell me in any detail how the drugs are affecting him.
Comment by Elizabeth — Oct 20th 2010 @ 8:45 pm
I think the time of day might be important in regard to the Intuniv. If sleeplessness is the result after taking it at night, take it in the daytime.

We finally took my son off the Clonidine to help him sleep at night and put him on Melatonin. We started first on the sublingual spray we found at a health food store, because of a recommendation from a friend whose child has autism. He would do about two sprays or around 4 mg. It really helped with helping him sleep and we let him have caffiene in the morning to rev him up. He didn’t need the spray since he takes lots of pills, so we just switched him to tablets and he takes about 4 1/2 mg. of the melatonin. The only thing Straterra helped with was sleeping. The rest was a bust. Vyvanse worked for a while, but didn’t stay effective. My hubby takes Vyvanse because the stimulants are not good for his high blood pressure. I think he should be on a higher dose because he is still so hyperactive, but he didn’t ask for it the last time he went to the doctor. His wisecracking comment regarding all his singing and constant talking- “It doesn’t bother me, so why should I take more medicine.” So ladies, don’t think your sons are going to magically mature- my husband is 48! (my 16 year old son said to tell ya’ll that he is more mature than my husband- most of the time he might be right plus I have control of HIS meds.)
Comment by Nancy — Oct 21st 2010 @ 1:31 am
My son is being switched from Medadate to Vyvanse, staying on the Intuniv as well. Any experience with Vyvanse, good or bad?
Comment by Kristi — Nov 4th 2010 @ 1:34 pm
Kristi, I know how you feel. My son just started 6th grade too. He is now up to 3 mg of Intuniv and it has helped but he still has strong eye blinking tics and hand twisting. I don’t see his focus to be that great either, I think it was better when he was on Buspar for anxiety. Maybe we need to add Buspar to his regimen. His psychologist is going to start some relaxation exercises also. I have a team meeting with his teachers tomorrow. I do complain loudly about any teasing. They must deal with it. When I didm, the school did react swiftly so don’t be shy to nip that in the bud!! Also, this site does help and talking to other moms may help too.
Comment by Regina — Nov 5th 2010 @ 12:34 am
My son has bad ADD from Tourettes- we tried intuniv for 7 weeks. His tics were gone, but there was no significant increase in his attention. ALSO, he went 7 weeks in a row without sleeping thru the night! we tried taking in am and pm- am was better, but he still woke up thru out the night. we took him off it last friday and put him back on 30mg of vyvanse. he is having trouble falling asleep, but is not waking up now. He does wake up early, though. Also, it seems the vyvanse doesnt work as well as it did before the intuniv! Help! what is buspar?
Comment by Heidi W — Nov 5th 2010 @ 5:20 pm
My son is not giving up at school, says he doesn’t want to do the work, I know that a huge part of it is his lack on concentraction and being able to focus and organize, he wont ask for help and the teacher’s go to fast and he is missing information, and he has such a low self esteem. The teacher says my son doesn’t care. How do you get a teacher to understand what your child is going thru and how to help?? He does have a 504 program but they don’t seem to be following it, and they say he doesn’t qualify for the IEP. I feel so bad for him, I’m hoping the Vyvanse will help. I’m so afraid of him giving up completely and how his life will end up.
Comment by Kristi — Nov 5th 2010 @ 8:33 pm
Buspirone is a mild anti anxiety. We tried it first but then his focussing was still an issue. Before upping the buspar we decided to try some ADHD meds but I wish we would’ve tried to up the Buspar first, I think it would’ve done the trick. Still working with the meds, been almost one year. It takes awhile. We moms really go through alot with our kids with special needs. No one really gets it if you haven’t been there.
Comment by Regina — Nov 6th 2010 @ 1:19 am
If they won’t follow the 504 plan, you can make an anonymous complaint to the Office of Civil Rights (though they will probably figure out who made the complaint). http://www.hhs.gov/ocr/office/file/index.html
Comment by Nancy LeBlanc — Nov 6th 2010 @ 1:53 am
Hello to all!
I mentioned a blog in an earlier post that is a great support group that addresses a lot of these concerns that I see trickling through here from time to time. I discovered it myself back in March and have now become one of 5 moms that write for the blog that deal with ADHD and it’s co-morbid conditions such as anxiety, ODD, etc.. check it out…it is a GREAT support group @ http://www.adhdmommas.blogspot.com or follow us on facebook at a moms view of ADHD. We don ot have to be alone in this! Melissa
Comment by Melissa — Nov 6th 2010 @ 3:11 am
We recently started intuniv for out 9 yo son, diagnosed with Touretts. He has some obsessive thoughts, difficulties sleeping, aggressive behaviors and meltdowns at home. He is on grade level and does not display any symptoms in school (physical or aggressiveness). We did intuniv for 1 mg for 1 week then increased to 2 mg last night. Think I might see a difference already on the 2mg – he slept better, did not wake up agitated or yelling (which has been his norm), and was not twirling and pulling his hair – which he does alot when eating breakfast (amongst many other times). He is complaining of fatigue. This is my main concern and the reason we took him off meds a year and a half ago. Anyone have any experience with this? Does the fatigue wear off as the body adjusts to the new dosage?

Maria
Comment by Maria — Nov 8th 2010 @ 8:02 pm
Maria,
Your story sounds familiar to mine. We gave our son 2mg at night, it helped with the drowsiness. Over time, it builds up in their system and it will get better. Nightime did the trick. Hang in there…the rewards are worth it in the end.
Melissa
Comment by Melissa — Nov 8th 2010 @ 8:35 pm
Hi Melissa,

Thanks for your post. I’m trying to hang in there, though I know Touretts can be very tricky/hard to medicate b/c of the comorbid conditions. we do give the 2mg at night…your son’s fatigue got better the longer he stayed on it? And my sons comorbid conditions are not formally diagnosed – just observations on mine and my husbands part. Has your son been formally diagnosed with the comorbid conditions? So hard to know what to medicate…his main thing is his explosive behaviors and is very oppositional/argumentive – very draining…hoping some medication helps…thx

Maria
Comment by Maria — Nov 8th 2010 @ 9:19 pm
Maria-
My son has tics and it all went away with the Intuniv. I cannot begin to tell you the difference it has made for him and our family. He was a classic ADHD case…hyperactivity, impulsive, inattentive, oppositional, OCD. I did realize that his opposition came with anxiety. In fact, I just wrote an article on it. Myself and 5 other moms have a support blog at http://www.adhdmommas.blogspot.com. There is a wealth of information and support. Please join us there and on facebook {a moms view of ADHD).
Melissa
Comment by Melissa — Nov 9th 2010 @ 12:52 am
Hi Melissa,

Cannot seem to get onto the blog, but will try the facebook. He only seems to have adhd symptoms at home, only. Thus, has not been diagnosed with adhd, but Touretts. I was told by a couple of practicioners that he does not have adhd, but I have my doubts and think it is comorbidtly linked to Touretts. Was your son’s primary diagnosis Touretts or Adhd? Just curious, as I’m still learning so much about Touretts.

Maria
Comment by Maria — Nov 9th 2010 @ 1:27 am
Maria-
That’s weird. try http://www.adhdmommas.blogspot.com I think I left a . out of the address. My son had the same symptoms (at home). They were there at school, but in the form of anxiety. It was my sons tics that lead me to ADHD. It all started coming together. Tics/tourettes is a very common co-morbid condition for ADHD.
Melissa
Comment by Melissa — Nov 9th 2010 @ 2:56 am
Maria- Yikes! I must be tired… it has no ‘s’ http://www.adhdmomma.blogspot.com
Melissa
Comment by Melissa — Nov 9th 2010 @ 3:10 am
thx! for all the imput/info.

maria
Comment by Maria — Nov 9th 2010 @ 3:11 am
2 days on 2mg intuniv with stomach pain and constipation/diahreah? did not have this on 1 mg for 1 week. Should that go away?

Maria
Comment by Maria — Nov 9th 2010 @ 10:50 pm
My guy had that at first, but it subsided. Do the best to keep fiber in him through veggies and fruits. It helped.
Melissa
Comment by Melissa — Nov 10th 2010 @ 12:09 am
thx..was he fatigued and cold? I’m monitoring his BP as it is a little low…89/75
Comment by Maria — Nov 10th 2010 @ 12:44 am
No, not cold, but he was fatigued. I give it to him at night to help subside the fatigue. I would give the Dr. a call though. Does he have a fever?
Comment by Melissa — Nov 10th 2010 @ 3:06 am
No fever, but I did call Dr. and she said to put him back on 1 mg. for a few more days…
Comment by Maria — Nov 10th 2010 @ 3:17 am
Was 1mg working? I actually cut Intuniv in half (1mg) because 3mg was too high. So he is now on 2.5. It’s been 2 1/2 weeks on this new dose and he is doing great. Something to think about if 2mg is too much and 1mg is too little.
Comment by Melissa — Nov 10th 2010 @ 3:31 am
no, have not seen much difference with 1 mg though it was only a week…i aksed her about 1.5 but she said not to split – at least 4 now anyway
Comment by Maria — Nov 10th 2010 @ 8:42 pm
A lot of these symptoms sound like P.A.N.D.A.S. This is an autoimmune disorder caused by bad antibodies a person produces to Strep. The symptoms can include – OCD, Motor and vocal tics, anxiety, attention problems, anorexia, etc. My son does not test positive for Strep in his throat but his antibody level in his blood has been very high for a long time. When he is around anyone with Strep his symptoms go up and we have to wait for the antibody levels to go down. He is on antibiotics all the time. The link attached has more information. It is still hard to find a doctor who knows about it and how to treat it.
Comment by Lori — Feb 17th 2011 @ 7:21 pm
My daughter is 9 and has Tourettes, anxiety and ocd. She started taking concerta in Sept./Oct. and started having impulses a month or so later. They were simple, at first, but then grew worse. She developed behavioral problems including anger, throwing things, hated herself, etc. and the doctor stopped the medicine immediately. Because it was a stimulant, she slept most of two days. As the medication got out of her system, she improved and was back to my loving and happy daughter. For the next month she was not on any meds for her ADHD and her grades and focus as school decreased. We decided to start her on Intuniv as we’d heard many good things about it. The doctor started her on 2mgs for one wk and then took it to 3mgs the next (giving it to her at night). She was constantly tired and sleeping when she came home and hard to wake up. Then we found out she was falling asleep in class, couldn’t focus cause she fought so hard to stay awake, so the doctor decreased to 2 mgs. Then, behavioral issues started up again-just like the issues with the concerta. She is taking 1mg. now and she is even worse plus she is so “jittery” she can’t sit still. She is so “wound up” it is driving us crazy. I am so confused as to the problem. Could it be the combination of the celexa and intuniv or could it be possible she is bipolar? I’m hoping someone has a suggestion or has had a similar experience and can help us figure out what it occurring with our daughter. She has always been a happy, loving and friendly girl.
Comment by Caryl — May 15th 2011 @ 11:25 pm
I think a lot of the symptoms you are all posting about could be undiagnosed P.A.N.D.A.S. It is fairly recent discovery and is an autoimmune disease that is triggered by Strep. The antibodies that some kids produce toward strep attack the basal ganglia in the brain because it thinks it is Strep. I thought my son had OCD, anxiety, tourettes, tics (vocal and motor) and ADHD. I found out about PANDAS and got him into a study in Oklahoma and found out it is PANDAS. He was only diagnosed once with strep years before. I think he carries strep in other parts of his body. We tested his ASO titers (strep antibody levels) in his blood and they were super high (977) with no recent strep infection. It is treatable but may be difficult to find a doctor that knows how to treat PANDAS. You may want to check out this website http://www.pandasresourcenetwork.com for more information. There are so many kids being misdiagnosed. My pediatrician was initially very skeptical but is know totally convinced. Your doctor may be the same.
Comment by Lori — May 15th 2011 @ 11:53 pm
We have had our 8 yr old on Intuniv for at least a year, she is up to 4mg. It was an answer to prayers although she seems to be outgrowing it they can not increase it any farther. I have noticed that she is haveing a hard time falling asleep at night lately, and found this website to see if any one else has this same problem. We give it to her in the am along with her Zolft any input would be helpful thanks
Comment by tami — May 16th 2011 @ 3:06 am
my son is nine years old and has been diagnosed with aspergers, adhd and now a tic. I was afraid to give him meds. I homeschooled for one year he did well until he started having aggressive bouts. He was normal up until about five. Then it all started changing. We tried vyvanse which his tic biting the inside of his mouth and stretching his lips got worse. I thought he would bite a hole all the way through. Then the dr realized he has a tic said the typical meds for adhd don’t work for a child like mine. He put him on intuniv. It was a miracle for me. He became resonable, could focus and I could read his writing. He is at 2mg now but I think he might need more. It has been a month since we started the intuniv. We had three break downs today and one yesterday. He is feeling out of control he says. He takes his intuniv at night. He still gets up at six or six thirty. I wished he would sleep longer. The intuniv for me is a miracle. I could barely take my child out before this. I just hope there are no long term side effects that they don’t know about yet.
Comment by Patricia — Jun 8th 2011 @ 5:12 am
Oh yes and school makes it worse. They have everything timed and it stresses him out. He is very intelligent, all the physicians say his IQ is very high. All he can think about is getting the work done so just doesn’t take the time to do it. He says he feels stupid. I home school all summer and have to convince him that we don’t need to get done we just have to learn. The school he went to even after I gave them letters from the Dr and therapist refused to believe he has a problem. I am mad and frustrated.
Comment by Patricia — Jun 8th 2011 @ 5:20 am
Patricia – You may want to check and see if your child might have PANDAS. See my posting earlier about it. Most doctors don’t know about it and don’t know how to treat it, it is a fairly recent discovery. Praying for answers for your son.
Comment by Lori — Jun 8th 2011 @ 5:32 am
Lori- How did your child get diagnosed with PANDAS. Was thee anything else that helped diagnose PANDAS for your child other than the titer test. And who performed the test? What treatment plan is your child on?
Thanks so much for your insight.
Melissa
Comment by Melissa — Jun 9th 2011 @ 7:21 pm
Now that you mention the pandas. When we came back to California his pediatrician said he sounds like he has pandas. And now that I think of it all his changes happened when he was around five and six. He had strep throat for the first time back to back.
Comment by Patricia — Jun 10th 2011 @ 5:23 am
What is the treatment for pandas? The intuniv seems to have stopped working. I am so disappointed. It seemed like it did a great job and then when his body starts getting used to it he becomes irritable and agressive. Wants to argue about everything.
Comment by Patricia — Jun 10th 2011 @ 5:25 am
Patricia- Intuniv has been the same issue for us. It works great and then it doesn’t. We are on a 3 month pattern. Since last May we had to adjust it about every 3 months. It’s so frustrating. I feel as though it is our magic bullet, but when it stops working it’s terrible.
Comment by Melissa — Jun 11th 2011 @ 2:45 am
Patricia and Melissa – We had my son take part in a study that Dr. Cunningham is doing to help find a test for PANDAS, called a CaM Kinese II test. He came back with a high positive for PANDAS. Then we tested his ASO titers and (very high – 977) and Anti DNAse-B test (also high) without having any recent strep infections. He also presented symptoms that fit the description of PANDAS. If you are interested look up CaM Kinese and Dr. Cunningham to get her email. I don’t think they will let me post an email address. They are still figuring out the best type of treatment for PANDAS. Most agree that antibiotics are needed in fairly high doses when they have strep or are exposed closely. They also believe that low doses of antibiotics are necessary to prevent being exposed. IVIG treatment has also shown great results but may not be covered by all insurance yet. A steroid burst is sometimes used to test weather or not IVIG would help to solve PANDAS plus antibiotics. My son always takes a really good probiotic to help replace the good bacteria that the antibiotic kills off. He currently takes HLC High potency or HLC Maint to do this. There are also many supplements and diet changes that can and do help. B-12 we have found to be super helpful in minimizing tics. It takes a couple of weeks but really helps. Things to minimize inflammation (brain) are helpful, such as Ibuprofen, courcurmin, quercetin, lutein, etc. Our doctor sometimes recommends going gluten free to help close the blood brain barrier which allows the strep antibodies into the brain if a child has leaky gut. There are tests you can do to see if this might be helpful or you can just try it for a month or two to see if it helps. I know there is a list on one of the websites for PANDAS knowledgable doctors. That would be helpful to find one near you. There is one in Chicago that does phone consults but his main solution is IVIG and antibiotics. We drive to Seattle for our doctor from Portland. Interesting book to read might be “Saving Sammy” about an extreme case of PANDAS. Hope this is helpful. May God bless you and your kids!
Comment by Lori — Jun 11th 2011 @ 5:50 am
My son takes both Adderall and Intuniv which has helped. But Thursday, his psychiatrist said that the State Board (didn’t say which) is having her stop prescribing long acting meds like Adderall and Concerta because of heart and possible stroke problems. She will only prescribe Vyvanse and Strattera, both of which he has tried but didn’t work. I have asked around the community to see if anyone had heard of a ban against the long acting meds, but so far no one has. It is so frustrating. Nicholas is 17 and it has taken us a long time to get his meds straight. Now we will have to find a new doctor. Has anyone else run across this?
Comment by Nancy in Louisiana — Jun 12th 2011 @ 10:42 am
This is my first time on this site. My wife and I have struggled for four years now with our oldest son’s tics. We first noticed them when he was 3 or 4 years old (he is now eight) and they consisted of continuous blinking. Gradually they went away and did not reappear until a year or so later. Since that time there has been a recurring pattern of excessive ticking for about a month followed by a 4-6 month lull. Each time the tics are different and have ranged from shoulder shrugging to head turning to stomach contracting and currently manifest themselves as simultaneous head jerking and shaking of his arms…almost seizure like. Up until this point we have opted to not try medication but he is becoming more active in sports and social activities and the tics are beginning to become a problem for him. This week the neurologist that we were taking him to gave us Intuniv. We were prepared to begin him on the medicine but then I found this site and read some of your posts and now I have some questions that maybe some of you can help us with. Blake (my son) does not have any of the symptoms that many of you have described in your posts. He only has tics….no aggressive or clingy behavior, no outbursts or tantrums, he sleeps and eats very well and is very outgoing and social and, other than the tics, is a very normal child. Yesterday was the first time that my wife and I had ever heard of PANDAS. We called the doctor where we lived when Blake was four and sure enough he was diagnosed positive for Strep in 2006. We are wondering if the Intuniv is the right thing for him given that it is primarily used in treating ADHD and are wondering if we should focus more on treatments for PANDAS? If so, can any of you tell us what those treatments might consist of and/or where we can go to find information about PANDAS since it appears to be a relatively new diagnosis being considered by the medical community. We appreciate any help you could give us. God bless all of you and your children.
Comment by Rob in El Paso — Jun 30th 2011 @ 1:51 pm
Nancy in Louisiana….
GOD help us all if the states are going to band Adderall and Concerta …lol ? I have not heard this…what I do know is that they have just come out with a generic form of Concerta and its great because its about 1/2 the price. So I find it hard to believe that “they” are banning it? I think you may want to look into that a little closer and please let us all know !!!
Kathy-Texas
Comment by Kathy — Jun 30th 2011 @ 2:05 pm
We changed back to a previous doctor (a neurologist rather than a psychiatrist) and she had no problem prescribing the Adderall. There is a lawsuit in LA involving Adderall from a few years back. Maybe the state board was the doctor’s malpractice insurance board.
Comment by Nancy in Louisiana — Jun 30th 2011 @ 2:10 pm
My grandson started experiencing tics (shoulder shrugging/head turning) after receiving his shots for kindergarten. Has this been the case for anybody else where you noticed symptoms shortly after a vaccination(s)?
Comment by Trisha — Jul 10th 2011 @ 11:38 pm
I don’t think tics and shots are related. Kindergarten just happens to be around the time these symptoms start. Is he on any medications because sometimes it is hard to tell which came first- the meds or the tics?
Comment by Nancy in Louisiana — Jul 11th 2011 @ 4:18 am
No medications.
Comment by Trisha — Jul 14th 2011 @ 12:45 am
This is about tics in regard to Tourrette’s- “Simple or transient tics are very common, affecting between 6% and 20% of children. Tics rarely begin before the age of three years, usually manifesting between 5 to 15 years of age, with the majority of patients affected by age 8. Initially tics are typically simple, motor more often than vocal, but can become more complex over time.” So kindergarten age is a common time to start. That is when my son was diagnosed with ADHD with tics occurring about the next year. http://www.mdvu.org/library/disease/ts/ts_sym.asp
Comment by Nancy in Louisiana — Jul 14th 2011 @ 3:58 am
Great site! I have questions regarding Intuniv as well. My son is 8 and has been on Intuniv for about 4 weeks now.
Background: He was diagnosed with TS and ADHD about 2 years ago. It started with nose sniffing, eye blinking, shoulder shrugging, then cursing. Nuerologist placed him on clonidine that immediately stopped the cursing, but made very sleepy. Then doctor put him on patch that worked for a little while, but then the tics came back and because I really didn’t want him on medicine, I took him off – because I figured it wasn’t working. Behavior became worse in school with being too aggressive in social settings or in transitions so then were told to try Risperidol – that helped with the agression for a while, but the tics were a problem. So again, I took him off of the meds. Behavior in class became such a problem because kids knew that he was easy target for picking on because he would blow up and get in trouble or if he thought students were staring at him for his tics or if they told him to be quiet (because of the tics) my son would scream and tell them to leave him alone or why are you staring at me – which again got him in trouble for disturbing the class. Saying and doing whatever he thought and the aggression has made his second grade year horrible. Moving into 3rd grade, I want him to have a better year. We opted to try Concerta before school was out and that made the tics go crazy! We then tried Strattera and sertraline and we didn’t see any results with that (he was on it for about a month or so). We are now trying Intuniv-2mg and he is very aggressive, the cursing tics are back in full effective, he is raising his voice when he talks ALL the time (its kind of like he is mad everytime he answers you or as if you are getting on his nerves when you ask him anything). He fusses with his twin brother all the time and he says it feels like he wants to scream all of the time and he can’t sit still or be quiet and because he says whatever he feels – it is very disrespectful to most adults and kids that he is around. My son is a good kid and has a good heart, but people are not able to see it because of all of this stuff. He has even been getting in trouble in summer camp. I’m at my wits end!!! I don’t know what else to try. It is hard to find people to help that we can afford or that our insurance will cover. I feel that every year that goes by and he is not doing better – like I am failing him as a parent and dooming him to a horrible life with many hardships…

I just need someone to tell me if the Intuniv will get better if we stick with it, do we need to up the dosage or stop using it all together. Maybe I haven’t given the other medicines a chance to work or to see the results before I stop using them. What is a good timeframe to use before you can start to see results with any of these medicines. Any comments would be appreciated! Thanks!

Also, would really love to find a good doctor in the Dallas/Ft. Worth area that specializes in helping children with Tourettes and ADHD, that takes insurance. Thanks!
Comment by Charie — Jul 14th 2011 @ 6:56 pm
Charie – You may want to investigate whether it might be PANDAS. I have listed some websites on earlier posts to give you more info. My son doesn’t even seem to get strep in his throat, but his antibody level in his blood is very high and has been. I did find a link from another parent in Dallas who recommends a doctor down there for PANDAS or other neurological conditions. Here is the link – http://www.latitudes.org/forum.....opic=12323
Maybe they could help. May God bless you and help your child.
Comment by Lori — Jul 14th 2011 @ 7:53 pm
Charlie,
My son was diagnosed with Tourettes, ADHD, OCD, and Sensory Integration Dysfunction when he was 6 years old. He is now 17. Over t, he years we have tried just about everything it seems ( from OT, social skills therapy, medications, special schools, etc)! We have found that the Risperadol in conjunction with Fluxtocene have been a good combination for the tics, OCD and anxiety. We tried many alternatives for the ADHD that would not increase the ticcing (Focalin, Concerta, Adderall, Straterra) and none of them worked. They either increased his anger when on it or when it was coming out of his system. For the past several years, he has been taking Vyvanse which has worked well. My daughter takes it as well.

There are several great doctors in Dallas that I could recommend but I do not know what their status in regarding insurance. I have used the same psychiatrist for years but she does not take insurance. I do know that neurologists can sometimes be good with Tourettes meds and file insurance but they do not provide the counseling that these kids often need. Aleays keep in mind, that as hard as this is for you as a parent, it is even harder on the child. If you want to post your email address, I can privately send you some names of psychiatrists that I know in Dallas that I could recommend. The school that I teach at has a referral list of providers and I know many of them personally. It could at least give you a start.

For those people who have written that they don’t like giving their children medication, I would like to share a quick story. When my son first began medication I debated as to whether to give it on weekends or not. When I asked him about it, he answered, “Mom, why wouldn’t I want them on the weekend? When I take my medicine, I am in control of my body. My body isn’t in control of me.” As a mother and teacher of ADHD children, many who have other conditions like Tourettes, I can say that the more consistency they can have, the better, including meds on weekends. The way it was presented to me by my son’s doctor was that if he was a diabetic you wouldn’t deny him insulin, so why not provide what his brain needs to function? After seeing the difference it can make, not just in my own children, but also in my students, I believe in that statement through and through.
Comment by Joni — Jul 15th 2011 @ 5:25 pm
One of my son’s friends does not take his ADHD meds in the summer and he is out of control. We will take him places, but he does embarrass us with his behavior. I think it is finances more than anything that keeps them from giving it to him.
Comment by Nancy in Louisiana — Jul 15th 2011 @ 6:14 pm
For all the burdens they carry, our kids seem to have been blessed with a lot of insight and self-awareness. My 7-year-old begged me to put him on a lower dose of Intuniv, but he didn’t want to go off of it completely. I think he knew exactly what it did for him — and what too much of it did to him.

My heart still breaks sometimes, but I try to keep in mind a stanza from Leonard Cohen’s “Anthem:”

Ring the bells that still can ring
Forget your perfect offering
There’s a crack in everything
That’s how the light gets in.
Comment by Heather — Jul 15th 2011 @ 6:58 pm
Thanks so much to everyone for your positive comments and helpful advise. @ Lori I had not thought about PANDAS because I didn’t think he had the symptoms, but I will look into that. @ Joni, thanks so much for your information whenever my son’s current psychiatrist gets back into town, I will ask him what his thoughts are about my son taking the med combination that you suggested for the tics and ADHD. I would also like to get the list of doctors that you have available. Any information that you can offer would be helpful… I just want to help my son have a better time in school and in life.
My personal email is: charie.price@att.net

Also, Joni, what side effects do I need to look for with the meds that your son takes. My son has also previously had two open heart surgeries (first one at six months and the second one at 1 year). He is doing fine now, but does still have to take a half of baby aspirin a day for the rest of his life. But he has taken other ADHD meds so I’m sure it will be okay… but just wanted to know what side effects you saw with the Fluxtocene and Vyvanse for a 8 year old taking it??? He has taken the Risperadol before and it seems to help with the aggression… I appreciate your thoughts and you can email if needed.. Again thanks!
Comment by Charie — Jul 15th 2011 @ 7:17 pm
I am getting ready to start my 10 year old son on Intuniv. We have put it off for years and now it is time. He has tics, OCD, high anxiety, and he struggles with a learning disability. I am hoping Intuniv will also help him in school!
Is anyone concerned that this drug has only been studied for nine weeks???? I don’t know what to do, I think it is odd that there are no further studies! Do you put them on the medication anyways??
Comment by Abbey — Aug 8th 2011 @ 5:53 pm
To Abbey: Intuniv has been difficult to get on board, and our daughter had to back off from 3 mg to 2 mg because of fatigue and heaviness. But, it has completely eliminated her mild tics and helped with her impulsivity. The short study time is concerning, but the main med, guanfacine, has been around a long time and is well-studied. You need to allow at least month (and two is better) to see if it has benefits for your son. We have used it for more than a year, starting at age 11 with our daughter.
Comment by jalynn — Aug 8th 2011 @ 8:48 pm
I am so glad I have found this page. I was looking for some new info on Intuniv. I have a 6 year old son that has been diagnosed with ADHD, OCD, ODD, and Teretts. We tried to avoid medicine for a long time but it began affecting his education and relationships with everyone around so we reluctently went on medicine. We started out on Focalin but when it would start to wear off my son was very violent. Next we went to Vyvanse but he had a reaction to that and caused his tics to be VERY bad. Next we went on Concerta which helped some but was still having alot of issues. They added Tenex with his concerta. That medicine helped but was gradually lowering his BP so in the end it got way too low and we had to come off of it. We are now on Intuniv (with Concerta). He has been on the 1mg for 5 days and will increase to 2 mg in a few days. I was just wondering if muscle cramps are common with this medicine? He is playing football as well so Im not sure if that is the cause (wasn’t bothering him before the new medicine.) I appreciate that everyone on here is willing to share their stories. WE have a great counselor and doctor but it always helps to hear how things are going with other parents as well. Good luck to everyone.
Comment by Tabitha — Aug 10th 2011 @ 5:35 pm
I am so thankful to have stumbled upon this page. My almost 7 year old has been hand licking and licking around his mouth with increasing frequenty over the course of the summer. We had noticed it, but frankly I thought it was a poor hygiene issue and had been approaching the behavior from that standpoint. Well, my sister who is a nurse was more concerned about it, so we went to see his Ped. She says it is a “Tic” (once we counted that he did this about 50 times in a very short amount of time) and gave me a “sheet” on how to handle….she said also to try “bitters” on his hands to see if this encourages him to stop. I am confused however, because the handout she gave me says to ignore the tic, not remark upon it, do not punish for it, and most go away in 2 to 10 months. SO……..should I ignore it or put bitters on his hands to make them taste bad enough to discourage? My fear is that by doing this I willl cause him to engage in a new “tic” that could be even more fretful!

Any advice?
Comment by Valerie — Aug 25th 2011 @ 7:54 am
Valerie – Please have him looked at to see if it could be PANDAS to rule that out. When tics, anxiety, OCD behaviors come on quickly there is a good chance it could be PANDAS. I have posted prior comments explaining. It is triggered by Strep and the body creating antibodies that attack the basal ganglia because it thinks it is strep. Most doctors are not aware of PANDAS because it is a newer discovery. My son hadn’t even had strep in a couple of years when we finally figured it out. He must carry strep in some part of his body. His antibody level in his blood to strep was super high. A doctor could run some blood tests to help see if it might be a problem (ASO titers, Anti-dnaseB). If it is PANDAS, it is treatable. See the web links listed in previous comments. May God Bless you and your son while you try and resolve his struggles.
Lori
Comment by Lori — Aug 25th 2011 @ 3:10 pm
Hello everyone,
My name is Ryan, I’m 21 years old and I have been battling Tourettes and OCD for pretty much my whole life. From reading most of the comments on this site, I have not yet seen a comment from someone ACTUALLY living with these unfortunate diseases.
Ever since I was young, I always had some sort of tic (not major, just little annoying things that make others stare at me) and not until I was at the age of being self-conscious was when I really realized I was not “normal.” I was officially diagnosed with a semi-low dose of Tourettes Syndrome when I was around, let’s say, 12 years old. Even though I was never diagnosed with OCD, I am 100% positive I have it. All throughout Middle School and Freshman/Sophomore of High School, I was on Haloperidol (Haldol). When I was on this medication, my tics cycled from good to bad, repeat, repeat , repeat. I recently found out that anyone who is taking a heavy dose of Haldol, can develop permanent motor tics; hence why I weaned off.
I just want to let everyone know what it is like to have OCD and Tourettes and how I have coped with it. Having a tic is pretty much equivalent to having an extremely intense itch. If I do not relieve my tic, I develop a very uncomfortable and unsettling feeling, along with not itching an itch. It is not just strictly physical, but mental as well. When I do not relieve a tic due to self-restraint, my mind will NOT forget about what tic I was about to do. However, when you restrain yourself from fulfilling a tic, you get a temporary great feeling, such as relaxed, calm, and mind at ease. But just a short while after (less than a minute) you get the urge again which repeats ALL DAY long, unless you are focused on an activity, or anything you need to put your full attention to. The one way I try to cope with Tourettes and try to prevent tics from happening is to REALLY think about what I’m doing and think about the Pros and Cons are by doing it.
The absolute worse part of having TS (Tourrette Syndrome) is the embarrassment of having people constantly look at you. Over time, this has really angered and taken a toll on me. Although it is natural for people to look when you are moving in unusual ways and doing “weird” things with eyes, mouth, etc., I always been very self-conscious about it.
Just a little tip to parents who have a child with Tourrettes, you should never point out to him/her that they are tic’ing a lot and say “are you okay?”. At times, even though tics are at its worse, your child will feel a sense of confidence when they tic around people and then look around and realize no one was looking. And if you (ex: parent) tell your child *stated above*, this will make him/her lose that confidence and feel somewhat depressed.
Due to when my tics are acting up, I would never want to go out in public and be social. Whenever I am around other people and I know this is the worst time to tic, I end up performing tics worse than when I’m alone at home and less pressured. Nervousness definitely increases tics.
The main reason why I am leaving a comment is because I have been on Intuniv for over 4 weeks now. The first week, I felt no difference. The second week, I started to feel great and confident once again. The third and fourth week was when I started up with my tics again and my OCD has been worse than EVER before and I can barely handle any more of it. Many people think that when someone is diagnosed with OCD along with Tourettes, the TS affects the child most. However, OCD is by far the worst. My rituals at night before I go to bed make me EXTREMELY angered and engulfs me in a sensation of hopelessness.
For parents out there: If your child has both TS and OCD and you are considering putting him/her on Intuniv, I would recommend to find another medication. From what I am currently experiencing, my OCD is making me pretty much freak out, physically and mentally.
I have my 2nd doctors appointment 3 days from now and I am going to get off this medication and find another.
Thank you everyone for reading this, and I hope this helped. I’m praying every day that I will still be alive and somewhat young when there will be a cure. I’m trying to be strong.
Comment by Ry-Guy — Sep 13th 2011 @ 7:11 am
@ Ryan…
thank you so much for your comments! My son is 12 and along with his OCD, Anxiety and Tics he suffers a launguage delay..It is hard for him to tell me how all of this makes him feel. Its so frustrating as a parent to not be able to understand what going on in your childs mind. So thank you for that!! In regards to yourself, know that most people are good and caring even though they may look at you, you have to believe its in a caring maybe curious way. I never understood or thought about people/children with issues such as you and our children on this page…until I was faced with it head on. I am a better person because of my son and others such as yourself!! Stay strong, positive and believe that the “powers that be” will find the help we all desperatly hope for!!! Look how far we have all come Best Wishes !!(ps…this page has helped me so much, stay with us if you need the support)
Comment by Kathy — Sep 13th 2011 @ 1:44 pm
It’s been a few months since I was last on and I think I was asking about Intuniv. Well since then, my 9 year old son who has ADHD and Tourettes was on the Intuniv and it did not work. It seemed to make his tics worse. My son curses and it was really bad. The doctor switched him to Vyvanse (1 capsule 30mg) and 1/2 pill of risperidone in AM and a pill and a half of risperidone at night. This has seemed to calm down the tics a whole bunch. It was really great the first 3 or 4 weeks. But they are coming back again (hopefully not as aggressive as before). The tics are still there and a new one has come up (rolling his ankle) but he does not seem as angry on most days and not getting into as much trouble at school. There are still issues at school, but not as bad. His grades are good. I’m just trying to keep my cool, because although I know my son’s tic is cursing – it just seems like the tic comes out when I’m getting on to him about something and it seems like he is cursing at me because what I have just scolded him about. Besides the cursing, he will say stuff like “shut up” and other stuff that seems disrespectful at the time and he tells me that was his tics… Sometimes I don’t know whether or not it is a tic or him just saying something. I really think he feels bad about it, because of how he looks when it comes out. He started crying yesterday and said he hated his tics and wished that he wasn’t living. We talked a long time about that and I told him that his life was given to him by God and it wasn’t his life to take and how sad I would be if he wasn’t around. He said he didn’t really mean it, he was just angry and frustrated. I think a lot of that is my fault, because depending on how I’m feeling – I’m a little more tolerant then other days. I think what gets to me is the profanity (constantly) and its the “f bomb”. I just continue to pray and ask God for patience and tolerance. My son is a sweet kid and wants to do the right thing… He just gets such a bad rap sometimes… It is really hard being a parent of a child with TS but I’m sure it is even harder living with it. @ Ryan, thanks for sharing your views and opinions we needed to hear that.
Comment by Charie — Sep 13th 2011 @ 3:20 pm
My son has ADD and had terrible ticking for years. We put him on theraputic doses of fish oils (6000 mg) and also Evening Primrose oil. It’s been documented that kids with ADD need more essential fatty acids. His tics went away completely and stayed away.
Comment by Danielle — Sep 14th 2011 @ 10:49 pm
My 12 yr old 7th grader has been treated for adhd since the age of 3. We have tried numerous medications, they will work great for awhile and then stop, we tried intuniv 2mg with 30mg vyvanse, my son had trouble sleeping and eating (he would be wide awake at 2am). We tried taking the intuniv at night, then switching to morning, no change in sleep patterns. He is starting to have trouble in school – fighting – he gets picked on then looses his temper – which is a strong one – he is failling school – gets behind and is unable to catch up…any sugguestions?
Comment by Kristi — Sep 29th 2011 @ 7:57 pm
what a great site – thank you, ryan, for your disclosures and honesty. my 18 year old son was just diagnosed today with adhd and mild tourette’s for tic-ing. given intuniv, and he is ready to give it a go. first semester in college and having a wonderful time, but we were told he was going to grow out of this intermittent tic stuff all thru his teens, and now in this very stimulating environment it is really giving him trouble and interfering with his class work and studying. i fear for side effects, having trouble finding info on adults ( over 17) taking it. he is determined to damn the torpedoes and do the i mg dose for a week and then 2 mg for a week… his college is in vt and we are in western new york, so he will have to self-monitor and that’s sad to me that i can’t be the eyes on the ground and watch him. but he is pretty mature and self-aware ( and as you pointed out, ryan, all of that energy and attention going to keeping still and wanting to not react to the ocd stuff…. my god, so much anxiety, no wonder he can’t concentrate on his work too…

anyway, reading all of this was certainly time well spent and i thank you all and wish us all luck with our loved ones….
Comment by miriam — Oct 7th 2011 @ 11:25 pm
Miriam,
I am very glad that your son has moved on to college and is facing social encounters when TS and OCD can affect it greatly. I have always believed that the best medicine for TS is to practice life as if you didnt have it. For example, doing everything someone withour these diseases would do.
I was also told by my previous psychiatrist that my tics are just a “teen phase” and SHOULD be gone when im an adult ( over 17). However, i had a feeling that that would not be the case.
Regarding school and focusing/doing homework/ reading/ and even participating in class, my TS and OCD have altered all of the above when i was on my fifth week of intuniv. I could not attend class due to emberassment and anxiety, along with not being focused due to those things.
I want to let all parents know that if your child is diagnosed withn TS, they can be a part of the disability system in their college. They can have notes taken for them, take tests in different rooms alone ( less anxiety ), first
Priority in signing up for classes, etc. I signed up recently and it has relieved a lot of stress off of my shoulders and made me have less anxiety.
Also, Miriam, i want to let you know that if your son has any side effects either the 4th or 5th week that is making it hard to have a nornal day, please and i mean please get him off Intuniv – it will only get worse. I pray for you and your son that things can become better and he can finally feel calm, relaxed and worry free. Thank you and god bless.
Comment by Ry-guy — Oct 8th 2011 @ 10:25 am
Miriam,
I am very glad that your son has moved on to college and is facing social encounters when TS and OCD can affect it greatly. I have always believed that the best medicine for TS is to practice life as if you didnt have it. For example, doing everything someone withour these diseases would do.
I was also told by my previous psychiatrist that my tics are just a “teen phase” and SHOULD be gone when im an adult ( over 17). However, i had a feeling that that would not be the case.
Regarding school and focusing/doing homework/ reading/ and even participating in class, my TS and OCD have altered all of the above when i was on my fifth week of intuniv. I could not attend class due to emberassment and anxiety, along with not being focused due to those things.
I want to let all parents know that if your child is diagnosed withn TS, they can be a part of the disability system in their college. They can have notes taken for them, take tests in different rooms alone ( less anxiety ), first
Priority in signing up for classes, etc. I signed up recently and it has relieved a lot of stress off of my shoulders and made me have less anxiety.
Also, Miriam, i want to let you know that if your son has any side effects either the 4th or 5th week that is making it hard to have a nornal day, please and i mean please get him off Intuniv – it will only get worse. I pray for you and your son that things can become better and he can finally feel calm, relaxed and worry free. Thank you and god bless.
Comment by Ry-guy — Oct 8th 2011 @ 10:27 am
thank you, ryan, for writing back so quickly. everything is so individual, i am wondering how to synthesize all of this info. one common thing i see in the posts is that the beginning regimen of intuniv is successful, but later sort of turns badly and causes problems… scares me as my son will be back at school and he’ll be dealing on his own until he comes home for thanksgiving. it feels strange to me that he was prescribed this by a pediatrician and not a psych, but his symptoms and description to the doc were evidently so obvious and common that it seemed appropriate…..
Comment by miriam — Oct 8th 2011 @ 9:18 pm
My 12 yr old was just prescribed Respirdal for his ADHD symptons. Can anyone give me any experiences with this?
Comment by Kristi — Oct 19th 2011 @ 3:28 am
My son used Risperdal along with his stimulant meds but not by itself. Risperdal put a lot of weight on him (which was a big change from the meds that kept him skinny), but it’s been several years since he was on it, and he still has a tummy. Of course, he is a non-athletic 17 year old, so that could be part of his problems. However his dad and I were not very active as teens and we were abnormally skinny. I think he was prescribed it for anxiety and he has probably been off of it about 4 years. Online it says “Risperidone (the other name for it) is also used to treat behavior problems such as aggression, self-injury, and sudden mood changes in teenagers and children 5-16 years of age who have autism (a condition that causes repetitive behavior, difficulty interacting with others, and problems with communication). I think Nicholas took it from around age 9-14.
Comment by Nancy — Oct 19th 2011 @ 3:46 am
Hi, My daughter is 9 and has been diagnosed with ADHD and Anxiety. She was diagnosed with ADHD at 5 and just diagnosed at age 8 with Anxiety. She is taking Focalin XR 15mg and Prozac 10mg and tenex 1 mg at night. She was doing well at school (3rd grade) until a few weeks ago. She stated picking her fingers instead of working on her class work. She picks until they bleed and then pushing on her finger until she gets the blood out. It is effecting her learning because she is so focused on Picking. She get angry if she is told to stop picking hiting and kicking her teachers. She is now also getting very hyper at school and at home..laughing uncontrollably and doing things just to get attenetion.

I have an appointment set up with a psychologist, but I am at a loss as to how to get her to stop picking her fingers. currently she is still on track at school but it takes alot of people to help her get her work done.

I was just wondering if anyone has had the same problem. I am imaging that the medicine is wearing off and her dose or medicine needs to be changed. Also, I am not sure if the anxiety is caused from the adhd meds or if she really has anxitey.

I just want to do the best for her so she can have a good childhood and enjoy herself. She cannot join group such as soccer or gymnastics because she wants to stand and pick her fingers the entire time. I want her to be able to enjoy these types of activities not stress her out.

She is a lovable little girl who loves everyone but she just cannot get through school without hitting, kicking or picking.

Any help would be appreciated. Thank you!
Comment by Susan — Oct 26th 2011 @ 4:47 am
Susan,

My son Ryan was diagnosed ADD at the age of five and has had several similar characteristics. The major one ….. picking at his eye lids. Scary right ? he was always having dry lids and redness to the point of a detriment to his health. Neurologist suggested behavior modificationtherapy. He obcessed over many things, but the psychologist we went to said when you notice any especially obcessive behaviors they need to be nipped quickly. We have stopped obcessions over telebubbies, mickey mouse figurines, dressing, sidewalks, clucking like a chicken( tourettes side effect), etc. Rubbing his hands was a tourettes movement he developed. We put cream to heal his hands on at home with gloves on for a long time. The best I can say with these types of children is… be consistant. Mean what you say and they will believe you. At times I almost felt guilty because I gave a little tude back to my son, which he now thanks me for. Things can and will get better. I also applied gloves with large velcro straps over his hands once we got them to heal. might even try applying small bells on the gloves to remind her that when she hears the bells she needs to stop. Limit the use at first so she can get used to it. Teach her to clap instead of pick. Advise her to think about her favorite thing and resist the movement. Ask her everday how she did at resisting the behavior at school. Be creative, and expain it’s okay to have movements , just not ones that hurt yourself. She is old enough to understand this, kids are so smart ! No one has the exact answer for you , but i am certain you will find your way, like I did. Ryan is almost 15 now and only takes Intuniv 3 mg. He has become a staight a student and now has become self aware of how to change a behavior as soon as it starts. It has been a long road. He started out on adderall, and many other Add meds before we realized it was tourettes. These drugs often spur the tourettes on when taken. Special flesh colored gloves could be purchased and worn to gymnastics and would’nt be as noticable. Think outside the box , try new things till you get what you need darling. Best of luck in your quest!
Comment by Heidi H — Oct 26th 2011 @ 7:35 am
This could be PANDAS. All of this is very consistent with PANDAS which is treatable. It is hard to find a doctor who knows what it is and how to evaluate and treat it. It is an autoimmune problem that causes your immune system to attack the basal ganglia when exposed to strep. The antibodies think the basal ganglia is strep. You can carry strep in many places. My son really never gets it in his throat (once many years ago). His strep titers are always high. I have posted previously with website information and more resources. It may or may not be PANDAS, but it really should be ruled out first. There are some blood tests that may help to decide but a doctor really needs to evaluate the whole picture with the tests. Dr. Cunningham also conducts tests which help to indicate if it is PANDAS but it is a study and not covered by insurance. Sometimes, they have funding and can help cover costs. The book “Saving Sammy” covers one boys story if you are interested in learning more. If you suspect PANDAS, try finding a PANDAS knowledgeable doctor on the ACN Latitudes website. May God bless all of you and your families.
Comment by Lori — Oct 26th 2011 @ 3:10 pm
Susan,
My son was recently put on Lexapro with Intuniv for Anxiety and ADHD. The Lexapro was great at first but after time i realized it made him more impulsive and hyperactive, very talkative, ect..Prior to Intuniv he was VERY moody in addition to his ADHD symptoms. I always suspected a mood disorder but Intuniv kept it at bay. We called the Psychiatrist right away and it appears that he had an adverse reaction to the Lexapro. Often antidepressants can cause a child who has a mood disorder to experience heightened behaviors such as impusivity, ect.. Be sure to discuss this with your Dr. if you think it is a concern. My son is almost 8 and is currently on Abilify and we are slowly getting him stable. The mood must be stable first before adding stimulants and.or antidepressants. By no means am I saying that your child has this. I’m just sharing my experience with the antidepressant association. Good luck and keep us “posted.”
Comment by Melissa — Oct 27th 2011 @ 2:27 am
just a quick update, it’s been a few weeks now on 2 mg of intuniv and my son is doing well on it ! there is so little info about adult usage but it seems that for now, at age 18, it is the right amt and the right rx for him. he might up it later if he needs to, but he is so relieved and happy that things are more under control. he told me that he feels like he lost the past year just from having to expend so much energy on controlling it all…. i’m so hoping it’s a permanent fix, although i realize that’s a bit idealistic. but his joy and relief is contagious so i’m riding the wave with him and just hope it lasts !
Comment by miriam lerner — Oct 27th 2011 @ 2:59 pm
Thank you for your input. We are seeing a Psychiatrist Friday thank goodness. She is now acting out in school in order to get a reaction. She is still picking but when they try to get her to stop, she lashes out at the teacher and her behavior elevates from there. She begins by hitting, then kicking and now she is throwing thing off of the teachers desk.

I have got to get this under control or she is going to be kicked out of school.

The only reason they have been so patient is because she has a IEP.

Thanks again for sharing your stories with me.
Comment by Susan — Nov 1st 2011 @ 2:18 am
Make sure the IEP has a behavior plan with it. They can’t kick her out if her behavior is related to her diagnosis. Check out http://wrightslaw.com for information about her rights.
Comment by Nancy — Nov 1st 2011 @ 4:08 am
has anyone had any experience with changing Concerta with generic Concerta. The only thing I notice with my child is his stomache does not hurt as much ? However my co-worker thinks her son is not doing as well in school on the generic?
we still have the tics, however, but we take the good with the bad?
thanks for any info.
kathy
Comment by Kathy — Nov 4th 2011 @ 7:57 pm
My son is 6. He has shown tics, twitches, and clearing of the throat since school showed in august. Last year in school, I noticed it, but didn’t think much of it because it would come and go. Today was the first time he has taken Intuniv. His doctor said she would like to focus on ADHD (which he has not really had a problem with unless around other kids) before she goes further in testing. Today was his first day to take the meds. His teacher met me at the car after picking him up and said he was 5x worse today with the meds. Climbing up the walls. Running around the classroom. (He has had behavior issuses, but just blurting out and tapping pencils). I’m not sure if he is having a reverse affect or not? Has anyone else had this problem with this medicine?
Comment by Ann — Nov 10th 2011 @ 10:21 pm
Hi everyone, an update on my 9 year old. We met with a new psycharist and she put my daughter on respideral. It made my daughter very sleepy and very weepy but she did not pick at all. We cut the dosage back and it turned her very mean but still no picking. We took her off of the resperidal and put her on Adderall but the picking is back. I have a call in to see what we do now.

Susan
Comment by Susan — Nov 16th 2011 @ 5:03 pm

Intuniv for Treating Tics and Twitches

Lexapro vs. Intuniv

Real-world side effects of Intuniv

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