Two boys with Tourette Syndrome

Heidi - posted on 04/16/2012 ( 3 moms have responded )

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My oldest son is now 11 and has had verbal and motor tics since he was 8. He is very outgoing and has never really had a problem socially because of it. He has gone through an array of tics from a similar hum, to throat clearing, head jerks, sniffing and mouth tics.



I now have a 5-year-old who started having verbal tics a month ago and it is just getting worse. He is so much younger than my oldest child was when he started showing symptoms. I worry that his symptoms might therefore be worse because they are starting earlier. Has anyone else seen this? My youngest just has a verbal tic that sounds like a hum but it is loud and when I discussed it with his teacher, she said children had been commenting on it. He will be starting kindergarten in the fall and I just worry that the teachers in public schools might not be equipped for this. He's so different from my oldest and is much more withdrawn and less social. He's also exhibiting some OCD tendencies, which I read can go hand in hand with TS.



Just wondered if anyone knew if when it starts younger, is it worse in the long run and also, if you have any tips for helping me transition him in school and deal with teachers. Thanks so much for your wisdom and for sharing your experience.

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Dana - posted on 04/17/2012

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My 11 year old son started having tics in kindegarten. It started with the eye blinking and a vocal tic. My son has always been in the special ed classes so we have annual review meetings. When we had the meeting at the end of kindegarten to discuss his I.E.P. plan for the following year, I made sure that they put it on his plan so his new teacher would be aware of it. If his tics became loud or distracting, he was allowed to step out into the hall until it passed. We have been so lucky that Matthew has had great teachers, no one has ever made it a big deal or drawn attention to his tics.
Has your 5 yr old had his kindegarten orientation yet? I would make sure that they are aware of his tics and OCD and if there are certain triggers your son has they can work around them. I have heard some parents having very bad experiences with teachers dealing with their childs TS, just be firm and if your son starts kindegarten and is having trouble with the teacher not being understanding and patient, then don't be afraid to speak up. I would even switch classes if there's a problem.
I also have a 5 yr old son who is starting kindegarten in the fall. No signs of TS in him and I'm praying it stays that way! Best of luck to you and hope to see more posts from you!

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Dana - posted on 04/17/2012

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I totally understand. We went through several pediatric neurologists before we found one that we felt good about, he really knows his stuff! Between red dye #40 and b vitamins, I've learned alot through this community board!

Heidi - posted on 04/17/2012

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Thank you, Dana! I am so glad you have set up this board - it is so nice to have a resource. Our doctors don't even really know what to do and any progress we have made has been from research I have done online or parents I have talked with. Thank you again for providing this resource and for your reply.

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