anyone here with or know someone with tourettes?

[raihna]

my 12 yr old son was newly diagnised with tourettes sydrome after he developed a sudden-like over night- head nodding 'tic' he does this kinda triple head nod thing every few seconds,other things we thought were allergies like eye blinking and rolling and also knuckle cracking have turned out to be forst -tics-no one in the family has this ,we do have a freind who s son has a severe case,i am just wondering if theres anyone else out here,the med-clonidine is not helping the -tic- my songets a sore neck and sometimes bangs his g head or scratches his gums accidently by ticking ,like when he is eating etc,,,any ideas or comments???

 

[we5frogs]

Tourette's is often a co-morbid condition ( happens along with another diagnosis).

In my sons case, (for those who don't know me, Gavin has Aspergers, and is 14) while he had some tics that came and went since he was very young, the actual Tourette's syndrome came at age 8 after a series of strep infections. His tics became very pronounced, with whole body movements, and because of the strep involvement, the doctors thought he had Sydenham's chorea at first, which is a rheumatic movement disorder.

When his rheumatoid studies all came back negative, they had us see a neurologist, who diagnosed something called "PANDAS" which stands for 'pediatric autoimmune neuro-psychiatric disorders after strep'. According to this doctor, there is a significant incidence of Tourette's and OCD presenting in children following strep infections, even in children who had no tic activity before that.

We also had no improvement with clonidine. We did have significant improvement with a drug called Orap, but later had to discontinue it as Gavin is allergic to penicillin, and Orap cannot be used with many other antibiotics. So, every time he had an infection, we had to first wean him off the Orap for a week before we could start antibiotics.

Currently he is not taking any medication for his tics. The medications had more side effects than usefullness, and as he has gotten older and comfortable with himself, he would rather not take them. When he has a tic that is painful, he usually can compensate by finding another movement that uses the same muscle group, or that causes the same sensation, although there are some times when this does not work. Although he is never without some kind of tic, they change all the time, and so if there is one that he can't alternate with something less painful, he at least knows that it is temporary.

My favorite web site, which helped me greatly when Gavin was first diagnosed, is http://www.tourettesyndrome.net. There are great definitions and explanations under the conditions section. There is a parent introduction, and some poems by kids with Tourette's. This site has a huge amount of info on Tourette's as well as any other disorder that can accompany it.

 

[Anirak]

My friend has tourettes, and he is fine. He is funny, and functions well in society.

 

[divi1599]

My son woke up one morning blinking his eyes, shoulder shrugging and i began my frantic surfing right after making a Dr appointment! Doc says my surfing helped. I began to add 2plus 2 . When we went to the doc the asked about lime disease.. didn't think so.. checked eye itself ...no problem ... then I asked her to check for strep... understand he had NO strep symptoms EXCEPT for eye blinking. We did the quick strep test and it was positive we started antibiotics the shoulder shrugging has stopped and the eye blinking has lessened. They call it PANDAS have they ruled that out? Research is still out and debated but the thought is an undiagnosed strep can cause the sudden onset of symptoms my dr says in some cases the antibiotic will do the trick but then we need to get quick treatment for an strep infection as they can return with reinfection. I'm still worried but we still have several days of antibiotics. You my want to do some reading on Pandas if you search on line search "PANDAS TS" or "PANDAS tics" so you don't get articals on the cute bears! Hope this helps good luck!

 

[Buckaroo]

Ihave had tics for over 40 years, since I was a young boy. I blinked my eyes and twitched my neck all the time and shrugged . I recently visited a neurologist that asked me all the questions to find out if I had tourettes. He said I did not but prescribed clonizepam which has worked pretty well to slow them down. Not one hundred percent but much better. I still think it is a mild form of tourettes which most cases are, but as long as medications help I am satisfied. Ive lived with it this long so I guess I can keep on. It seems that most folks with tourettes are compulsive and are disruptive in school. When I say compulsive I mean always checking things and putting things in order. I do not do this but I am a little compulsive. Anyhow this why my neurilogist does not think I have tourettes, but I sure feel like it. There are other medicines out there if clonizide does not work so keep working to find one that works .

 

[divi1599]

We have our first neurologist appt in one week! We saw some improvement after 5 days of amoxiclin but day 8 symptoms took over again and he had the slightest sniffle, so we went back day 11 (10 day dose) and that's when the pediatrition said we need a neurologist. We also changed the antibiotic to augmention were 10 days into a 14 day script and dare I say since day 7 we've seen great improvements! He is a great kid last year in first grade he was selected as the "Good Citizenship award" teacher was always sending free homework passes and commenting on he good behavior! So I don't think we have behavioral issues and while I sometimes wonder about the compulsived behavior it's very isolated like sometimes when he sits at our counter he looks from side to side 2 times before he settles, and when he gets off the school bus he likes to wash his hands but he"ll
play in sand or mud and come right to the table without washing his hands so I struggle between normal kid behavior and compulsions!!! I guess I could drive myself crazy till we get to the neurologist! I've been reading alot about vitamins and food allergies he LOVES milk and noodles and from what I've been reading those are 2 of the biggest connections! It will be horrible if we have to remove those from his diet! One thing at a time! Thanks for "Listening" (reading)!

 

[Buckaroo]

We have our first neurologist appt in one week! We saw some improvement after 5 days of amoxiclin but day 8 symptoms took over again and he had the slightest sniffle, so we went back day 11 (10 day dose) and that's when the pediatrition said we need a neurologist. We also changed the antibiotic to augmention were 10 days into a 14 day script and dare I say since day 7 we've seen great improvements! He is a great kid last year in first grade he was selected as the "Good Citizenship award" teacher was always sending free homework passes and commenting on he good behavior! So I don't think we have behavioral issues and while I sometimes wonder about the compulsived behavior it's very isolated like sometimes when he sits at our counter he looks from side to side 2 times before he settles, and when he gets off the school bus he likes to wash his hands but he"ll
play in sand or mud and come right to the table without washing his hands so I struggle between normal kid behavior and compulsions!!! I guess I could drive myself crazy till we get to the neurologist! I've been reading alot about vitamins and food allergies he LOVES milk and noodles and from what I've been reading those are 2 of the biggest connections! It will be horrible if we have to remove those from his diet! One thing at a time! Thanks for "Listening" (reading)!

I pray all will turn out well with the neurologist and he will be a normal happy child!!!!

 

[JesseRaymondBassett]

I know someone with tourettes. She's a nice Christian girl.

 

[Entertaining_Angels]

My son is starting to have issues that may be tourettes. Fortunately, the current tics have eased since we started homeschooling but sometimes this can be so hard...

sigh...

 

[Amanda99]

theres a kid in my math class with it. he will suddenly yell or laugh or just make really weird noises at random times. it scares me sometimes cuz the class will be totally silent and then he will suddenly start yelling or screaming.