Tourette's Syndrome in Kids

Yesterday, I went into the school for an IEP follow up. Chris has an IEP for speech therapy, and the speech therapist felt it was time to remove him from the program. He is at 100% in all speech sounds while he's in Speech therapy. His only remaining problems are being reminded to use his sounds outside of therapy.

While I was in the meeting, the therapist asked about the many tics Chris has, which include smacking his lips repeatedly, rolling his eyes all around (especially if you are trying to get direct eye contact), sniffling his nose when he doesn't have a runny nose, rapid eye blinking, throat clearing, and lip licking.

Chris has had these small tics for as long as I can remember. I've brought them up to his doctor before- specifically with one that really bothers me- he chews the skin off his fingers, and chews his finger nails right down to the nail bed. His doctor has always made it sound like it's part of the ADHD, and that it's nothing to worry about as long as Chris isn't hurting himself.

Well, the therapist said that all of those tics are classic Tourette's Syndrome. She said that in the past, she worked with a psychiatrist who worked exclusively with Tourette's children, which is why she was able to recognize and watch how often he was doing what he does. She did say that obviously she can't make a diagnosis like that, but urged me to look into it.

She also said that it's not uncommon for kids with adhd to have tourette's or vice versa, but that adhd stimulant medications (which he's on) tend to make the tics more exaggerated. While we were talking, she brought up that with kids who have Tourette's, the tics are involuntary, almost like the kid needs to keep moving just because otherwise, it feels like their skin is crawling, if that makes sense.

Now, while I agree that on paper, it does look like something to look into, she also said something that I didn't agree with- that she doesn't think he has adhd at all, but that tourettes can make it seem like he does.

However, with tourette's, the only real problem is the uncontrollable moving around. Chris has problems further than that when he's off his medications. But, if the meds are stimulating tourette's tics, then it would explain why he's so resistant to meds after a few months of being successful with them- the stimulants just keep stimulating the tics, which causes him to move around more, or even lash out by hitting at things (or people).

So, tomorrow I'm going to call and talk to the nurse at the doctor's office, and get a referral to some place here in Lansing to get him looked at for Tourette's. The therapist also quickly mentioned that Tourette's isn't what you see all the time on TV. She said that the cases of people cussing, and people unable to sit in one place (or, as she put it- their heads spinning around on Dr. Phil) are extreme, and usually untreated cases of Tourette's. 15% or less of Tourette's patients actually have the random swearing thing, and the rest is a case of people who are not treating or managing the Tourette's.

From what I'm finding online, most kids who have it outgrow most of the physical symptoms by their late teen years. It's also more common in boys than girls, and can present at any time from 2-20, with most of the more prominent problems displaying between the ages of 8 and 13.

I've always said I thought Chris might have something more going on. This is the first time I've ever thought about or considered Tourette's.

The down side to this, is that there is only 1 medication that Chris could take without a stimulant in it, and we've tried it with little success. But, that was years ago, so it might work better now. We'll wait and see.