Tourette Syndrome & Tic Disorders Support Group

I don't know about anyone else, but Wesley actually was relieved to know that he actually had something wrong and it was not just that he was weird. In his little mind he thought that he was the only one in the world acting like he was acting. After we had a name for it he kept saying, "you mean there are other kids that do the same things I do?" And when he saw the documentary "I Have Tourettes But Tourettes Doesn't Have Me" he actually cried and said, "I know just how these kids feel". When it got to the part where it was talking about OCD, he said "that is just what I do!"

I believe it helped him to know even though it was hard telling him all about it. No one can accept anything until they recognize that there is truly something there.

I hope this helps you somewhat. I know everyone is different. Has your son actually been diagnosed yet or you just noticing tics?

Hello!

I too believe it is very important to put a name to an issue--even if the person is fairly reluctant to hear it. I believe this is the case because when you are armed with the proper knowledge/information, you can get the proper and right answers to how you can and should carry on in life. And I believe that a lot of kids worry even more than they should about what is happening to them because they don't know and have so many fears surrounding their problems. Also, this will give him something he can tell other kids or adults if they ask and he doesn't have to be ashamed.

My son is only 6 but we took him to a wonderful neurologist who talked openly to Danny about it and he seemed to understand what the doctor was saying. But, on the way home we asked him if he had questions and he actually asked us, "Am I going to die because of these tics?" I was sooo glad he asked that question because he was obviously worrying about it and I was able to tell him that he was NOT going to die. He also saw a commercial on tv about Fleas and Tics on dogs and he came running into the room and told me, "There is something you can put into the bathtub and that helps wash off the tics!" I was a bit heartbroken but was so glad he asked/told me about it because I was able to tell him those were different kinds of tics that dogs get and that his tics didn't wash off. I think he was a little disappointed but seemed ok with that answer and just went on playing again.

Find an good doctor and if you can, bring a video (I used my digital camera) showing the doctor the tics (in case they don't show up on the doctors office).

Hang in there!
Kristin

Hi!
I just bought books for Sam to read. The chapter book QUIT IT is a short read, and he was shocked to see himself in it. There are also younger aged books that are even a quicker read...

Just helps to know that others out there have it and it's totally ok!!!

Thanks you guys. I feel the same way, but my wife .. won't take a stand and wants to pretty much ignore it. I think that's not in his best interst.

He doesn't really even know/admit about the tics and resents suggestions it might be 'something'. Yes he was diagnosed in a 5 minute pediatric neurologist appt. He prescribed abilify which we tried, but my son got to resent it shortly after and we stopped. It got worse for a week or so after stopping then settled back a state that's not as bad as it was. no meds now, which is ok with me.

BTW, kristn, I ROFL'd about the washing tics off comment from your son. cracked me up. Thank you all. I sure would like also hear an opinion from someone who has TS and is grown...; those folks have a lot of valuable info for us parents.

I'm in complete agreement with everybody else that it's very important for kids to know and understand their TS. It can be a huge relief to understand why you're doing such annoying things. However, I also understand your son's viewpoint. Keep in mind that he's 11. My daughter started at 5, so this is simply the way she's always been. She can't remember *not* having tics. Your son knows that he's different, that something is "wrong" with him. He's at that age when being a part of the crowd is really important. Pre-teens all want to be just like everybody else. As he gets older, he'll start identifying his peer groups and focus on individual characteristics that help him belong. He may be more receptive at that point to learning about his TS. But for now, it's an embarrassment.

I was having grand mal seizures all growing up, as far back as I could remember. They were just these annoying things that I did. I didn't realize it was a problem until my parents started noticing myoclonic jerks and absence seizures - smaller, less apparent seizures. Unfortunately, I was about your son's age when they first started seeing them and I tried my best to hide them. It's not that I didn't know something was wrong, but that I was embarrassed. The grand mals stopped around that time, but the jerks persisted even 'till now. My diagnosing neurologist told me the name of my diagnosis and what it was, VERY briefly. Even at my pre-teen, embarrassed age, that was enough for me. I was still embarrassed and tried to hide it, but I understood it in my own mind. I had a label and it helped me, even if nobody knew it did. I didn't see a neurologist again 'till I was an adult, but I always knew of my diagnosis and accepted it. Eventually, I was comfortable to research it and talk about it.

The long and short of this very long comment is... Be patient with your son. He's at a tender age when being different is embarrassing. He hears you, trust me. Don't force him to acknowledge that he hears you 'cause that's bringing his embarrassment into the open. Find indirect ways of exposing him to the topic. Good luck to you.

they sound like miled ts but the splasing thing not so mutch ts is somting you can do enywhar not just in a pool me i role my eyes to because they feel irretated or somthing and no eeyedrops wont help so if ur seeing mild ts u can get help and stop it wile its blooming dont w8 call a doc and if it comes to him/her to taking meds ask about abilify first best meds ive taken so far and if hes is young th pills are about half the size of you pinkey nail and verry easy to swallow the best of luce
urs truley
Francisco j Apodaca

Hello all. Someone wanted to hear from someone who has TS and is an adult, well I am 34 although some would not say i am very adult, still kid at heart. I was diagnosed with TS when I was 10, I don't remember much but I do know it caused a little concern with my parents, they have been very supportive of me even though I have had to deal with this. the main thing about folks with TS is that we don't learn or think the same way normal folks do, i learn very quickly but i have a learning disability, my brain does not function in the same way others do, it skips around, it is very hard to focus on a single subject for long or i will get bored and start to think of other things totally unrelated to the subject at hand. over time we get better at focusing on a single item but it takes years of practice and a great deal of support and stubborness on our part. I don't know if this will help in the short term but i hope it will in the long run. I belive you should tell your child, whether they will listen or not is up to them and eventualy they will come to terms with it, especially with strong support from you.

MBigham:
Sounds like you're describing ADHD and a learning disability. While these two are not specific characteristics of TS, we *all* know that TS is NEVER *just* TS. In fact, my daughter's neurologist says that "true" TS is only "TS-plus" and that tics by themselves aren't TS. ADHD, LD, and OCD (obsessive-compulsive disorder) are the 3 most commonly seen co-morbidities, so it's no surprise that you're also suffering from them. In fact, the rate of TS people with a LD is astronomical! If a child is diagnosed with TS, the next step should be to assess for a LD.

That said, many TS symptoms actually mimic these disorders and it's often - maybe even impossible - difficult to differentiate. I prefer not to try to determine the diagnosis causing my daughter's symptoms; I feel it's much more functional to group all of them under the TS umbrella.

I don't have TS, but I share my daughter's *curse* of ADHD and OCD. I suffer from the same focussing problem you described. One tip I've found to help me and my daughter is to distract ourselves when trying to focus. Odd, I know, but it works. I think of it as occupying that blank part of my brain not currently engaged in my task and desperately wanting to wander. In college, I had a formal accommodation to play games on my computer (or edit photos, format documents...) during lectures. My notes were so stellar that I was notetaker for many other ADHD students (not to mention my friends!). (My computer crashed shortly before finals one quarter - I was in serious trouble until a classmate passed me her PDA to play with. What a life saver!!!) My daughter has squishy balls that she plays with under her desk in class, or she'll practice a dance routine with her feet. Whatever you choose, it must be something you consider "brain-dead" - so that the empty brain space is occupied, but does not distract from your higher cognitive functioning.