Anyone have experience with Intuniv for Tourettes?

Wendy - posted on 08/27/2010 ( 5 moms have responded )

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Hi. I'm Wendy, mom to Nate who will be 15 next month and has been diagnosed with Tourettes since he was 8. I stumbled on this website looking for information and help as we transfer Nate from Tenex to Intuniv and I'm wondering if anyone else has had similar experiences.

Branded, but not generic Tenex worked wonders. You would never know that Nate had Tourettes unless you knew him very very well. His tics were nearly unnoticeable. But we've been having trouble finding the branded original tenex, so his neurologist switched him to Intuniv, which is supposed to be a time release version of Tenex. He's been on it for 3 weeks and it's not working. His tics are going a mile a minute, new tics are showing up and he can't control them for more than 10 seconds.

He starts highschool for the first time with an entirely new set of kids in one week.

The doctor now has him on tenex in the morning and intuniv at night, planning to switch him over to all intuniv. I'm worried for him.

What a terrible time to be in full blown worse throughs of Tourettes symptoms that he's ever had.

The doctor keeps saying that the intuniv will "eventually" start to work. But I'm going out of my mind. If I can't stand to be near him while he's ticing like this how are the kids at his new school going to react? And I know that he feel miserable about it.

Did anyone else transfer from Tenex to Intuniv? Does it get better?

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Catherine - posted on 12/25/2013

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My son is 11 and has been ticking for the last 3 years, however in the past 3 months it has blown up. Tonight he is ticking so badly he could not fall asleep, cannot read his book and I just feel devastated. I have to call the neurologist tomorrow to get him started on meds. I am so worried about him going back to school when the holiday break ends. I feel very alone and have been searching desperately for some support. I also feel like I am losing my child. He is in physical pain from the tics and I feel so hopeless. We are going to start with Intuniv and hopes that this gives him some relief.

Martina - posted on 11/25/2013

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I feel Like I am losing my child. He was diagnosed with Tourette's two years ago but we have known about his ADHD and other ( PDD, or Asperger's- doctor's would not say) He also recently added to the alphabet soup OCD. He has a high IQ and he always struggled with social interaction even though always wants to make friends. He was on a 504 in the past and in GT classes. This year seventh grade, it seems like his world and our turned upside down. I here all the time that after early puberty (13-15) it will get better, but he is getting more depressed and feels himself to be "dumb" and feels like he has lost his creativity. He can not focus because we can not find anything that can help him focus and all medication ( synthetic or homeopathic) seem to make everything worse. He often looks like he is seizing and we are getting further and further in debt going to doctor's testing to make sure he's not having seizures and trying to find ways to help him. We feel so helpless and hopeless at times. Just this week and next he will be getting an ambulatory EEG five days at home done, then an MRI then doctor's visit with the neurologist and psychiatrist. the worst of it is he feels hopelessness and has made comments of not wanting to live like this any longer. I am constantly re-assuring him that this is only temporary and he is loved and that when he gets through this he will come out of it stronger and better for it. I have to convince myself of that too, even though it is sometimes so hard. I wish I could take it for him! Can I just say I HATE TOURETTES, ADHD AND OCD! They Suck!!!!! I am sorry I just am venting but I know that you understand what I am feeling. Thanks for having this blog so I can do so. Is there light at the other side of that tunnel?

Dina - posted on 09/07/2011

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Wendy, my daughter who is 14 and just started at a NEW HS has had trouble with motor tics since grade school. It was really bad in third grade around 8 then when she was entering middle school age 11. Once again, as we transition yet again, this time to HS, her tic's have become worse than ever. We tried everything alternative imaginable. Acupuncture, Chiropractic, homeopathathy. THese measures worked in the past, but none worked this go around. We were using Clondine at night. IT helped her to sleep which was wonderful, but did nothing for the tics. Now we have her on Intuniv week three and she seems worse not better. BIg outbursts that last long in duration.
I too wonder how long it will take. Initially she took it in the AM, then switched to PM. That seemed to interrupt her sleep so she said AM was better. It's painful to witness and I feel so powerless. We'll give it a bit longer but just how long I dont know. We are at the 3 week mark as well. one week at 1mg now 2 weeks at 2 mg. And worst of all it think it makes her very nasty and not nice. Just what a mom of 3 girls needs. Attitude. Good luck. Let me know if things got any better.

Anitra - posted on 11/22/2010

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we just put my son 11 on intuniv last week because he was holding back his tics in class and was showing signs and symptoms of ADD so our Neuro said lets try intuniv and so far his tics have been real bad, he isn't able to hold them back now, I hope this medication starts working soon, how much time do we need to give it I wonder?

Karen - posted on 10/07/2010

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We went from Clonidine to Intuniv. My understanding is that Intuniv is supposed to help as a non stimulant form of ADHD medication too. My son takes it at night because it makes him drowsy during the day. So far, nothing has really worked for his tics. He hides them during the day at school, mostly under his desk. And at home needs a good 30-45 minutes solid ticcing before being able to attempt homework. My son is 12 and I would say his Tourette's is manifesting right now. I have heard this happens with puberty. Maybe your son can have a way to excuse himself from class so he can release his tics, and then return and try to get back on task. I know it is difficult and I hope you find something that works for your son.

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