Do you know anyone with Tourette's Sydrome?

[DISQuestion]

Hello. I am a Community Board regular using a fake identity. I think my son may have Tourette's. DH thinks so too. We're afraid of taking him to the doctor because we don't want DS to think there's anything wrong with him. His tics don't bother him. He shrugs one shoulder at a time while pulling on his shirt. At first we thought his collars were bothering him, but he does it every 15-20 seconds. He also pulls his chin in toward his neck and sort of freezes in that position while looking at something. He is smart and does well in school. His teacher didn't mention anything at his conference. I didn't ask because I didn't want to bring it to her attention. I'm so scared for my son. I don't want him to think he's weird. How far will this go? What should I do?

 

[teri]

I answered on the CB... but I wanted to add, Tourette diagnosis requires the presence of more than one motor tic over time, plus vocal tics. Nevertheless, I think you should ask your pediatrician for a referral to a specialist, to do an evaluation. And do get Children With Tourette Syndrome : A Parent's Guide by Tracy Haerle (Editor), which is a wonderful book about parenting any kid with a physical difference, Tourette or not! I hope that this tuns out to be a habit and not tics, but even if it does turn out to be Tourette, it isn't the end of the world. Hang in there!

 

[Jordan's MOM]

I was reading through the boards and saw your post.My sister's DS has a simular situation. His repetive actions tend to be more verbal that phyical. Her doctor has told her it is related to torettes and obsesive compulisve disorder but nowhere near as serious.Like your son, it is rarely a problem at school. My sister has learned what brings on these actions (not enough sleep and stess) and by controlling these factors she keep the tics under control most of the time. She follows the doctors advice to not mention the tics at all to her son. She does however, talk with his teacher each school year to let her know what is going on and has a letter from the doctor explaining the situation. He is an all A student and has no problem what so ever in school.She has also talked with the principal just to keep the door open in case he would need an IEP for some reason at some time. Talking with the doctor made things better.Don't be afraid to talk with the doctor.Call and discuss your concerens with the Dr. in private before the visit with your son. Then take him in for a check-up.I know you are scared and I am sending you prayers and prixie dust!

Jordan's Mom

 

[SueM in MN]

Welcome and here's some more pixie dust for you.
You already got some really good info, but I also found you some websites that might be helpful:
Tourette-Syndrom.com
I'm a little leary sometimes of the .com sites, since they are usually companies our to make money, but the site looks like it has some good info.

Tourette Syndrome Association
This one is a non-profit organization.

Tourette Syndrome Organization
This is another non-profit organization and has a good links page.

 

[kackie]

Our DS developed a dramatic facial tic last year. I definately recommend taking him to his pediatrician. There is a blood test they can perform to see if he has had an untreated previous strep infection that could be the cause. Many tics are transient and do not indicate Tourettes. Our DS's tic only lasted 5 months and has not returned. There is hope that is will spontaneously go away! Our thoughts are with you! Kackie

 

[Tiiiigergirl]

My son has TS. Teri is right in that he would need to have at least one motor tic and one vocal tic that has been observed over at least one a one year period of time. If it is not impacting his learning abilities, his peer relations and doesn't seem to bother him, then he could be like the thousands of children that just have tics and then grow out of them.

Of course taking him to be evaluated is confidential and depending on how you frame it to your son he won't know that there is even a problem. Most of doctors/therapists offices are a lot of fun for kids and they really enjoy going there. You could also make the 1st appointment for just you and your husband without your son to get a feel for the provider.

In our case, our son's behaviors were so disruptive to all parts of his life that we were grateful to have some answers but I still remember how frightened and angry I felt at first. Feel free to ask any questions and good luck!

 

[momejay]

My son (5) has autism/obsessive compulisve disorder. He only communicates a few words. He has been to several doctors. His doctors have told me that some of his verbal outbursts are similar to that of torettes. He also has a need to stare at his right hand for a few minutes turning it back & forth at the wrist. The vocalizations seem to increase when he is stressed. I can't distract him from preforming these actions. He stops briefly & then returns until the "need" is satisfied. He started new medication in August that has helped. We had trouble eating out & shopping before medication. I just explain to everyone that he is pretending he is a fire truck or an elephant. I don't know what I'll say a few years from now. (People can be so unforgiving.)...but his doctor said he mat grow out of it.
I think that if it were interferring with his school life that his teacher would have mentioned it. Try talking privately with his doctor. See if his doctor thinks that further tests are needed. Maybe he just thinks it is a "cool move?" My cousin used to shrug his shoulders & wipe his nose alot & he's working for NASA.

 

[seashoreCM]

Unfortunately there are a lot of crazy people who make moves that look like Tourette's Syndrome. This makes other people prejudiced against those who really have TS.

Maybe it would be worthwhile for persons including children with TS to wear a badge that says so and also includes the words "More information, www.tourette-syndrome.com" at the bottom!

I also suggest that deaf people wear a badge or show a card saying so. And for those who had surgery including implantation of metal plates, such a card would expedite going through metal security detectors.

Therapy is avaialbe for people with nervous tics that are not TS. Too bad everyone who could use that doesn't have access (notably financial) to it.

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