PattiS

so, to catch up a little, I want to ask a question. It may have been posted before, but here goes.


Does anyone here have children with Tourette's Syndrome? My dd was recently diagnosed with it and is on meds for it now. We are still working on the dosage.

Any advice you have will help alot, thanks!!

Kaytee

sorry, no experience here. I have heard that it is becoming more common in children. Have you tried finding a forum that is specifically for Tourettes?

Welcome back btw and hope you stick around and maybe teach us about your dd conditoin

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PattiS

Hi Kaytee, thanks for responding. I am actually a member of a board at cafemom. They have one especially for TS. I just thought I would see what other experiences I could hear about. If there are other parents of kids with TS, I could talk about my dd's situation, although I am far from an expert!!

Kaytee

no but you are more knowledgeable then most parents so therefore you are the expert amoung us!!
I am glad you found a forum that has more people, and you never know someone might be browsing this and have a child in the same situation

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jrrsmom

I am very good friends with a woman who has tourettes.

PattiS

May I ask what are her tics? How long has she had it? Is she on meds?

jrrsmom

She mostly just makes noises. I don't know how to explain them other than 'grunts' and that's not really what they are. She twitches her head a lot. Almost to the point to where you want to do it with her. She exaggerates the first syllable of her words most of the time.

She was diagnosed around 12 I think. She was hit by a car on her bike and they think that 'triggered' it.

She was on medication as a child but she was very very groggy and couldn't function. She does not take it now.

I also work with her and when she first started it was hard to get used to her and her 'noises'. Now I don't even notice. When she's really stressed its worse. She very rarely curses and if she does it s**t. Nothing extreme.

PattiS

Yeah, the things you see on tv and movies--with them cursing alot and saying things that are inappropriate, ie SLu% and NI$$er and such are vary rare, those are the extreme.

They really don't know what causes it, they think it can be genetic, although they don't know how. I read somewhere that vaccines sometimes cause it, but they aren't sure.

My dd is on Tenex, but we are having a hard time finding the right dosage, the next step in meds is anti-physcotics and I DO NOT want to go there!!

Her tics are the head shaking (and throwing her head back), finger crossing and closing her hands, rapid eye blinking (which is one of the first signs), and the newest is her eyes rolling back.

I have noticed that I "forget" about her tics, then I notice them again. I feel so bad for her, she likes to run like most kids, but when she is ticing, she has a tendency to fall. Her head starts to hurt when she is ticing alot also.

Kaytee

that is so sad. I do hope they are able to find the right dosage for your daughter and that they do start learning more about this disorder

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