Welcome to tourettes-support.org!
We are glad you found our website. We wanted to introduce ourselves and explain why we have created our support group and this website.
Who we are and why were here:
Cheryl:
My name is Cheryl. I live in Appleton, WI. I have decided to start a support group in the Fox Valley area (Northeast Wisconsin) because we have a son that has Tourette’s syndrome and when he was first diagnosed, we were scared and did not have anyone to turn to for help or even just to listen to my fears. We also were not able to find doctors or psychologists in our area to help us out. We do not want that to happen to others. We are also trying to help our son realize that he is not alone in the world of Tourette’s.
April:
After watching my daughter's twitches turn into non-stop bodily movements and small constant repeat of words sputter from her beautiful smile, I needed to figure out what was going on. I took her to the doctor who did not witness what we were seeing. After video taping our daughter (for proof) and seeing a Neurologist, we finally knew what was going on. Now how do you deal with it? I feverishly searched for support groups to only find none. I called the national Tourette's organization looking for information. As there was no immediate help since Wisconsin does not have a "sponsored" support group, I am thankful TSA.org kept my contact information and hooked me up with Cheryl Heule (who also called TSA.org looking for information). I feel compelled by passion alone to figure out how to help my 11 year old daughter and others, including parents, cope with Tourettes. Our mission is to collectively come together and build awareness of Tourettes and create an environment for a support network. We need to pray that God will walk along side of us through this journey and every journey!
Beth:
In December 2006 our son Jonah woke up one day with severe tremors. After months of doctor appointments, they had finally decided that he had a rare condition called Sydenham's Chorea which is caused by an untreated strep infection (we didn't even realize he had it!). The strep damaged the part of the brain that controls movement. The doctors were hopeful that intravenous immunoglobulin treatments would reverse the condition. After a year of intravenous treatments the condition was getting worse. They now feel he has a severe but rare form of Tourettes Syndrome.
Some days are great and no one would ever know, other days he will violently thrash around shaking and writhing. These tics happen 100+ times a day and some last up to 15 minutes. We have tried numerous medications but have not found any that have made the tics manageable and most have dangerous side effects. We've also tried chiropractic and acupuncture therapies to no avail. Our last resort is to have Deep Brain Stimulation which we are hoping he will have in the early part of 2009 (this was a decision that we did not take lightly and had 3 separate movement disorder neurologists' opinions who all strongly suggested the DBS).
