Intuniv and other questions

[crazy]

My son has had a increase in facial tics this year, I feel puberty may be the culprit. He has been on Topamax for 5 years and has had a lot of success up until this year. I know most on this board don't use meds but it truly has been a positive medication for him. He has a decent diet overall and can't really figure out triggers other than lack of sleep and maybe caffeine. I haven't tried the gluten free, dairy free diet because I don't think he could have went 9 months at a time tic free if those were triggers.

We have added Intuniv and he has been on for 1 1/2 weeks and I think there is an increase in tics. I know it takes several weeks to see improvement if there is going to be improvement. Has anyone had good or bad experiences with Intuniv? I also wonder if it's coincidence because this is also the time of year that he has a flare up.

Also, I have read accupuncture can help but how do I find one that knows about tics?

Any help would be appreciated, he starts high school in the fall and fear bullies with all the facial twitching that he has.

[Rachel]

My son is 14 and has been on Intuniv for 2 years. It took about 6 weeks before I saw improvement. My son started on a low dosage but this dosage had to be bumped up. It keeps his vocal tics under control. I would give it a few weeks. This medication regulates serotinon and dopamine levels.

[Chemar]

Intuniv is primarily an ADHD medication (aka Tenex , guanfacine )

http://www.webmd.com/drugs/drug-152956-Intuniv+ER+Oral.aspx?drugid=152956&drugname=Intuniv+ER+Oral

From what I know of it, usually it is only rx for tics that are co-morbid with ADHD?

 

I would urge you to also look at the potential adverse side effects just so you are aware of those and can be watchful for them should your child exhibit them.

 

Acupunture has always been one of the most helpful treatments my son had. You should ask if the acupuncturist has experience with children/tics. Select a clinical acupuncture practice.

[Emish]

I can’t really speak to the medication issue as I didn’t take anything when I was in school. As I became an adult, my anxiety level rose and I began Haldol and was on it for over ten years. Something I don’t recommend. After I got off of Haldol I began to learn about tic triggers and I realized just how much anxiety affected my tics, specifically when I’m waiting for some event to arrive. (Such as the new school year) I also realized that my tics always got worse in summer. I realized that it probably has something to do with either mold or pollen that is so prevalent in summer. Now, after I've been outside in summer, the first thing I do is get a shower. Then, I will breathe steam for about 10 minutes. It seems to help.

 

You’re probably right regarding the puberty angle. Also, his anxiety about starting high school could be adding to it. Certainly, the thought of being made fun of is a daunting thing. One thing I can say about it is that in my experience and in the lives of many with TS, having a particular activity in your life that you’re passionate about is a big insulator against the psychological effects of bullies. My thing was that I was good at baseball so that was a type of protection for me. I don’t know if your son is athletic or not. I know that some people who are not gifted in a sport have used weight training as a tool to boost their confidence level. There's something about hoisting iron that just makes one feel mentally stronger and confident. (And certainly, building some muscles could be an effective deterrent against bullies. J

 

The most effective thing though is for him to simply laugh it off immediately. He should explain what he has and how he can’t control it. Then, if the bully doesn’t stop, he needs to muster the initiative to go right along with it. If the bully begins imitating him, he should join him, performing a few tics right along with him and then sharing a laugh, saying something like: “I know, the brain is crazy isn’t it?”

 

The worst thing he could do would be to lower his head and appear hurt. It will hurt temporarily of course, but if he can just “act as if” if doesn’t that very first time a bully strikes, it will most likely die out. The bully will have no incentive to continue. After all, where’s the fun of making fun of someone who not only shows no sign of getting upset but laughs? Have him role play with his Dad (or other male friend) so that he is ready to go and knows exactly what he's going to say and how.

 

Hope this helps a little. I will say a prayer for your family.

 

Tom

[crazy]

Tom,

Thank you for your kind words and helpful advice. I need positives in my life. I think I personally have become obsessed with helping my son. The worry that I have just weighs heavy on me.

My son is an incredible athlete who thrives in competitive situations. This also makes him tic more. He is also an honors student. I am very proud of his accomplishments. He has said that he hates the tics but they don't affect his life. He feels that people don't notice or at least they don't say anything to him. He is quite good with snarky comebacks if people say things to him and he generally brushes it off.

I should probably back offa little but when things get tough for him I want to have answers that can help him. He does struggle with anxiety and gets stressed easily, that is why I am looking into acupuncture. I am hoping it will have a calming effect which could help with tics.

[Emish]

Yeah, I guess that’s every parent’s cross right?—moving from trying to protect them from anything to acknowledging that we can't protect them from all of the stings of life. It is painful. But from everything you’ve said about him, he seems very equipped to handle it. Something that helps me is always trying to step back from the daily worries and look at life from the big picture. And in this case, maybe that would mean thinking about the many successful people who went through with their tics. I’m thinking of baseball player Jim Eisenreich and others. (Not being much of a soccer fan, I just learned that America’s goalie Tim Howard also has TS and was ridiculed for it.)

 

But I know what you mean about sports exacerbating the tics. I also found that. I still remember learning that positive excitement has basically the same neurological effect as negative stress. As a songwriter, I have to limit my composing very greatly. If not, the excitement will take over and I literally won’t be able to stop moving all day and can make myself sick from the constant motion. I’ll only get one or two hours of sleep.

 

When I really need to write, I’ll try to limit it to a few days and then begin taking some Benzos for another few days to calm my brain down a little as I finish what I’m working on. So, it’s always a delicate balancing act doing the things you love and not going crazy in the process.

 

 

I didn't mention Cognitive Behavioral Therapy in my last post. For me, this has been a big help. The human mind is always going. This method of becoming aware of what’s going on in our minds and learning to recognize our negative thought patterns is indispensable. We learn to challenge the anxious thoughts that may be feeding the tics.

 

Those of us with tics, obviously, we are much more sensitive to stimuli, changes, irritants, up and coming events, etc, and for whatever physiological reason that we may never understand, our brain begins to transfer that event, concern, uncertainty about something, etc into a movement somewhere in the body or a sound. As I’ve gotten older I’m always amazed at how closely my thinking is connected to my tics. For instance, as soon as I start thinking about something that I don’t want to do, my tics will increase and so I’ll have to adjust the rest of my life accordingly (such as not taking on any other projects that might stress me further until that event is over.) So I’ll begin using more positive self-talk, and for me, prayer also helps.

 

 

So it’s quite probable that his thinking; the way he processes whatever stimuli that he encounters which might bother him, is the trigger; maybe in a way that he doesn’t even yet understand. Perhaps learning relaxation techniques and CBT from a good therapist would help him to more effectively process the stresses of life. I know it has helped many with tics and OCD.

 

Just a thought.