National Stuttering Awareness Week on May, 2018: Do i have tourette syndrome?

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National Stuttering Awareness Week 2018.

Do i have tourette syndrome?

Yes, it does sound like your have Tourettes Syndrome. I am the founder of a Tourettes Support Group and my 12yr old son and 16 yr old daughter have Tourettes, OCD and ADHD (ocd & adhd typically come along w/ ts). My daughter also had the throat tic that you have! It drove her crazy. Sometimes her throat would end up hurting at the end of the day. She went up on her prescription of Zoloft and it totally stopped. My son had the head shaking tic and picks his scabs too. The stuttering you mention is TS also. You said this was inherited. Well, that person probably has other tics that you don't know about. You should print out a symptom list and show it to them. TS, OCD and ADHD are hereditary. The other cause can be head trauma. The cursing type of TS that everyone hears about is very rare. Less than 10% of the cases.

There are many medications that can help with TS, but you need to find a doctor who really knows TS. Honestly there are not many of them. I would highly suggest that your mom makes an appt with the Chief of Neuropsychiatry or Chief of Psychiatry at the Children's Hospital in your area. If you happen to be lucky enough to be near Johns Hopkins (Baltimore), Yale University Med. Center or UCLA they have the best of the best as far as TS doctors. Otherwise, go to Children's like I said earlier. Why am I not suggesting a Neurologist? Everyone in our group (34 ppl) who have gone to a Neurologist first have then been sent directly one of the two types of doctors I mentioned above. From what I have been told Neurologists are not trained enough about TS or it's medications.

In addition go to tsa-usa.org. This is the National Tourettes Assoc site. You can click on here to find the nearest support group in your area. I can't tell you how much this has helped my kids!! It is also wonderful for the parents to go to the support group too. They will learn so much about how to help you. Ours is very active with "Moms Coffees each month and kids events so the TS kids can hang out together and not have to worry if they are ticcing or not. There is also an Education section there. This has literature that can be printed out to give to teachers and school nurses so they understand TS.

You should also have a 504 Plan at school. If you have TS, OCD or even just ADHD your can get one. This basically a contract between the school that say that since you have this illness you can get accommodations at school. For instance on my son's 504 it states he only has to do half of the math homework (he has adhd and can't focus for long), has a permanent bathroom pass if he needs to leave to go release his tics, is not penalized if he forgets his homework at home, extra time on tests, doesn't get in trouble if he shouts out an answer w/out raising hand (adhd), shorter reading assignment. (tics can make him loose his place and take longer) the list goes on and on as too what accommodations you can get. Go to www.wrightslaw.com This explains further what a 504 is. The tsa-usa.org site has a lot on 504 and school accommodations as well. It is a legal document. Once your parents and the teachers sign off (agree to it) they HAVE to follow it. You mom just has to send a email to the school nurse or school psychologist to request a 504 meeting.

Lastly, if your parents have not figured out that you have TS yet I would print out some info from the tsa site to read. They really need to understand this as well as OCD and ADHD if they are going to help you. Another site I just found is www.uihealthcare.com . They have an wonderful list of Tourettes, OCD and ADHD symptoms and medications that will help each. One that is not on there, but is now being used a lot with TS patients is Abilify. My sons OCD and TS symptoms were almost completely gone after being on this for 2 weeks! It was amazing. It is advertised as a antidepressant but the doctors that really know TS know that it is now being used off label for TS and OCD too. If you go the medication route a lower level medication like Zoloft may be one they start you on first. Zoloft was all my daughter needed.

Sorry I went on and on here. It just breaks my heart to hear about kids like you out there who think they have TS. OCD or ADHD and are not getting help. I'm so proud of you for doing so much research on it! Way to go. The more you know about your illnesses the more help you will be able to get. I hope I was able to help you a bit. If you have any other questions you can email me at karen@phxtsgroup.org. If your mom wants to email me with questions that is fine as well. If it will help, maybe you could print this and show her.

Best of luck to you kiddo and hang in there!

Karen

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