Any parents of children with Tourette Syndrome?

[*Lisa*]

We're pretty sure that DD has Tourette's. We have an appointment set up with a specialist at the end of July, and I'm wondering what we should expect from our first appointment. I'd also just like to connect to some other parents out there in the same boat...

[khaoskat]

No child with that diagnosis, but didn't want your post to get ignored for a long period of time.

You will probably get some responses starting Tuesday, everyone is on weekend/holiday time right now...I am home nursing a newborn, so I tend to lurk a bit more, since not much else to do....

[teachma]

I am wondering what makes you pretty sure he has Tourette's Syndrome...because when my son was 5-6-7 years old (and truthfully, even before that) I suspected, and the became increasingly certain, that he had Tourette's. I did not pursue a diagnosis, but since he already had a dx of anxiety (with an OCD component) and many other quirks, I felt that Tourette's could easily be a part of the neurological profile of a child like my son. He had various, changing motor tics as well as a tendency to repeat phrases, kind of muttering them under his breath. During the last 18 months, however, there have been NO motor tics other than the occasional eye-blinking and absolutely nothing that could even be mistaken for a vocal tic. I am pretty sure, at this time, that he does not have Tourette's Syndrome. Especially because I have read that it "gets worse" as a child heads toward puberty, and his tics have mellowed out as he grows up. Are you comfortable elaborating on your concerns about your child?

You can probably find my old, old posts abt my son's tics all over MDC...

[*Lisa*]

Sure... She seems to meet all of the diagnostic criteria. She started having tics at least a year and a half ago (she'll be 8 this summer, btw). We didn't know they were tics at the time, but it's quite clear in retrospect. Her tics have sort of moved down her body... She's had both motor and vocal tics, though the vocal tics are not currently happening (at least not much). Her motor tics have become more complex. They now include some skipping and jumping and a weird thing with her abdominal muscles (that she does while also shrugging). She hasn't gone more than three months without any tics, so I'm pretty sure that puts her in the Tourette Syndrome category.

We became pretty sure that her tics were tics when both her gymnastics coach and her therapist (she has an animal phobia) mentioned something about them in the same week. So far the tics haven't caused many problems for her. She says they're annoying, but that's about it. We homeschool, so we don't have any school issues to handle. We aren't planning on medicating her at this point. We're going to see the specialist partly to establish care (the waiting time to get an appointment for new patients is months long, but my understanding is that existing patients are seen sooner) and partly to have a confirmed diagnosis so that we can talk to her gymnastics coach.

I need to run now, but I'll look at your previous posts when I get a chance, teachma.

[buttercup784ever]

My son is newly diagnosed ADHD, and he started having tics (that we noticed) in January of this year. If he continues to do so his neurologist will give him the Tourette diagnosis, too. Right now he rolls his eyes, clamps his teeth down, makes a moaning kind of sound while eating and drinking (that's the verbal). He'll be 8 in August.

I watched this video online:
http://www.tsa-usa.org/ZNewDiag01/content.html

Warning: It's 3 hrs long, so you may have to break it up. lol

It is FABULOUS! It really answered a lot of my questions about treatments, and the question of "what do we do now?" The medication my son is taking for the ADHD is making the tics more prominent, but it has increased his self esteem so much we don't really care. And he doesn't even seem to care about the tics either.

[fairejour]

I don't have a child with Tourette's but I did grow up with two, very close, cousins with it. I remember their tics just being part of who they were. They got worse as they got older, but they didn't like the side effects of the meds, so they just learned to deal with it. Their cases weren't as severe as some I've seen (on specials and the such), just stuff like swallowing, humming, rocking, etc. They are now happy 31 year olds!

[*Lisa*]

Thanks for the responses, everybody

Buttercup784ever--I really appreciate the recommendation. I've been to TSA's web site, but I found it overwhelming. It's terrific that your son's medication has given him such a self esteem boost!

Fairejour, do your cousins still have a lot of tics, or did they mostly outgrow them?