DS has Tourette's Syndrome

So, DS has had a variety of tics for months, though at first I thought many were sensory seeking (sniffing) or habits/rituals. They tend to wax and wane--he'll do something for awhile, then the tic disappears and there may be none for a little while. Then another would appear.

But I read about Tourette's Syndrome recently, and thought the description sounded exactly like what DS is doing--lots of head jerking, shoulder shrugging, sniffing, grimacing, blinking. So we saw his neurologist yesterday, and she does think he has Tourette's Syndrome. The good part is that she thinks most likely it is developmental and will fade in time. She wants us to get some lab tests, but other than that, no treatment at this point. She said there are behavioral therapies, but she thought he's too young to benefit from them at this point.

Does anyone have experience with this? I need to do some research and see what options are out there. It's mostly a harmless disorder physically, though it can wreck self-esteem or make it harder to learn. After getting the PDD-NOS diagnosis, this seems not so terrible, but it does sadden me that my son will have one more issue to deal with.

Re: DS has Tourette's Syndrome

Many hugs

When my brother was a child (around age 5) he developed ticks and would make this sound all the time (almost like clearing his throat but he wasn't). They thought it was tourettes but back then they didn't know much about it and didn't care to really diagnose him anyway.

It went away within a year on its own.

Re: DS has Tourette's Syndrome

Thanks! That's good to know. I am hoping that his doctor is correct and this just goes away at some point soon.

It's amazing how little you know about things at times--I did think this usually involved cursing or making inappropriate noises, which it can, but his doctor said the cursing in particular is fairly rare.

Message edited 1/4/2012 9:50:02 AM.

Re: DS has Tourette's Syndrome

I had this as a child. It 'peaked' at around 7 yrs old where I would have one , then it woudl fade, then something else would develop. a lot of twitches, sniffling, scratching my arms or one area, scraping my tongue with my teeth, blinking...

I had no treatment either...it faded on its own ...it peaked with stress.

I'd say by 13 I had lost most tics, although I did devlop some obsessive ( OCD) like issues ( some of which co-existed with the tics at a younger age) and the Dr.'s believed it was a kinda of manifestation from the Tics...they do think there is a definite link to OCD from tourettes.

I would watch as he gets older for OCD symptoms, while I dont want to prematurely scare you, I know for certain that early therapy can be a benefit.

My nephew ( who is 9) also has tourettes ( along with some other nuerological issues) , I will ask my sister if he takes anything , etc. HE has ADHD , and I believe thats the only thing he is medicated for.

Lots of luck!

Re: DS has Tourette's Syndrome

Re: DS has Tourette's Syndrome

I am going to FM you when I have more time.

Re: DS has Tourette's Syndrome

I spoke to my sister ( who said if you had more questions or wanted to talk you could contact her, so if thats something you want to do , now or down the line, let me know and I will give you her email or connect you on Facebook to her).

She basically said the tourettes is considered 'part' of my nephews other issues. It is closely linked to OCD and ADHD and he has them as well.

It also only started appearing after he started having seizures at age 5, he is on epilepsy medications for that. He has OCD and ADHD like I said. He is treated for the OCD with an anti anxiety medication, although not presently on it.

His tics come and go and have remained mild and actually seem to be 'seasonal' for reasons unknown and appear more late summer/fall.

Not much info , but wanted to pass it along.

Re: DS has Tourette's Syndrome

My nephew has Tourettes and on the spectrum. He had several tics, but it was not until he started to shake his head pretty much on a constant basis that he was taken to the Dr.

The Dr. put him on medication to help control his tics and its made a BIG difference.

I know some kids it is stress induced, but others it's something that is forever.

Re: DS has Tourette's Syndrome

My son has Tourettes. I noticed many tics when he was about 2 but every doctor said his sniffing and clearing of his throat and blinking of his eyes was due to allergies. I just knew they were wrong. It wasnt until about a year later he started jerking his head and falling on the floor at a wedding. We thought he was having seizures.

Turns out he had Tourettes and we never knew it. They ABSOLUTELY wax and wane. Its hard to know what meds work and whats just coincidence. My son has had some terrible times, but THANK GOD, I took him off of all meds in June and he has NO tics right now that are noticable!! Nothing. Knock on wood!

Its supposed to be the worst during their teenage years, I think due to hormones... however it has gotten better once he turned 10.

I hope things work out well for you. Please contact me with any questions. He has an IEP, ADHD also. He is now in Boces, but its more due to his bad behaviors from when he was on meds. IMO he doesnt belong in Boces anymore.