Tourette's? - Mothering Forums

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Old 04-28-2012, 10:37 PM - Thread Starter
 
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I think my 3yo may have Tourette's.

I first noticed his tics a little less than a year ago, and they've come & gone & come back & changed. He had an EEG and neuro exam after the first tic started & results were normal. There is some family history of minor tics/Tourette's and a bit of OCD.

His tics are mostly motor (eye blinking, mouth twitching, shoulder shrugging) and I don't think anyone but me really notices them as tics actually at this point. He also has delayed echolalia & echopraxia (again, only noticed by those close to him), I don't know if that's at all related, plus some other things he does with his face that I'm not sure what they would be classified as (sticking his tongue out, eye aversion). Actually, the more I think about it, the more many of his quirky behaviors make more sense in the context of them perhaps being tics.

So I don't know what I'm looking for here... Advice/experience I guess? Is this something that even needs formal diagnosis? From what I understand, there really aren't many safe treatments for this, and not always a need to treat it... I guess I am most worried because he already struggles socially (a bit awkward, very shy & anxious, etc.) and I hate to see him have something else hindering his social life. I don't know if it's better to acknowledge the tics or ignore it. Already I see people mimicking his movements a bit (in a joking, affectionate way, at least!) and I don't know the best way to handle it.

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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Old 04-29-2012, 12:32 PM
 
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The Tourette Syndrome Association website might be helpful for you:

 

http://www.tsa-usa.org  

 

My son does have Tourette syndrome (he was diagnosed about a month ago, but I'd strongly suspected he had it for almost 2 years). He'll be 8 years old this summer. He has a variety of vocal and motor tics; sometimes they're very obvious (like when he had a shouting tic for a few weeks), but usually they're subtle enough that strangers probably don't notice them. I think just one of his friends has asked him, "Why do you do that?". No one else has said anything. I've talked to the parents of a couple of his closer friends, so that they know what to tell their kids if they ask about Micah's funny movements or noises. I don't broadcast the fact that he has tics/Tourette syndrome, but I'm very open to talk about it if the situation warrants it.

 

We've always made a point of not drawing attention to his tics; they're involuntary, so why comment on something he can't control, anyway? And up until very recently, he seemed really unaware of his tics, unless it was a motor tic that was so strong that it was bothering him (tossing his head was one; stretching his mouth really wide was another). When he asked about these tics and showed some frustration that he couldn't stop them, we explained simply that sometimes his muscles got kind of bored and wanted to do something, even though his brain hadn't sent that message to them. If your son notices his tics, I imagine you could come up with something equally simple and non-frightening. Now that Micah is starting to be more aware of his tics, he does sometimes want to talk about it.

 

If your son seems to fit the criteria and you want to pursue a diagnosis, there are two benefits that I found, personally. One was simply  having a roadmap of sorts; I could start doing some research and find out what was going on and how to best address it and help him. The other was for the benefit of others: when we went to the library and a librarian rebuked him for making "those noises" in the library (duh.gif???!!!!!!!!!!!), I could explain quietly that he had Tourette syndrome (or, if your son just has a tic disorder, you could say that), that he really couldn't control his tics, and that he wasn't trying to be troublesome. My explanation didn't instantly cure her ignorance (she then told me that she knew that "Tourettes" could control it, and that he just needed to be taught irked.gif.....), but it did hopefully plant a seed.

 

My younger sister has Tourette syndrome, and it's been very, very interesting and helpful to hear her insights. She wasn't diagnosed until high school (way back in the day, no one really knew about the syndrome), although she'd had very noticeable verbal and motor tics since she was 6 or so. She got so much flack from our parents and others who would tell her to, "Stop doing that!", and she's really emphasized how important it is to understand and support kids who have Tourette syndrome or another tic disorder.

 

Joni and kids, incl. Micah, 7, w/Tourette syndrome

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Old 04-29-2012, 12:42 PM - Thread Starter
 
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Thank you so much, it is really really helpful to hear insight from someone with more experience with this!! I just want him to feel comfortable in his own skin (which is already something he struggles with). I know he is young, the neurologist said it is really really uncommon for tics to start at only 2yo, I don't know if that means his will end up more severe or maybe he will grow out of them. I will check out that website, thanks!!

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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