Tourette Syndrome & Tic Disorders Support Group

Hello everyone!

My name is Kristin and I am mom to an adorable 6 year old boy, Danny who starting having various tics a few months ago. We took him to an awesome doctor, Dr. Erenburg at the pediatric neurologiy dept of The Cleveland Clinic earlier this week and they spent 2 1/2 hours with us getting his history and doing a full neurological exam. I was able to take a few videos of Danny's 8 different tics and he also did most of them right in the office so the doctor confirmed he was having tics and explained what we might be facing in the future (which I had already read all about--I am a librarian so I have a lot of access to information--sometimes too much!)! I am glad to have found this group as you all seem very caring and very informed!

A little about Danny's history--at age 2 he was diagnosed with epilepsy--absence siezures along with 1 large petit mal seizure and some other "shaking" episodes upon waking up in the morning. These lasted for about a year and then just miraculously disappeared(without medication). I was a bit concerned the tics and sleep issues he has been having lately might be another form of seizures but they are pretty sure at the neurologist that they are tics instead.

Then at the beginning of 2007 he began to have fevers--30 days of fevers over a 4 month period of time. He also had various different types of rashes along with nose, mouth and eye sores. He bruises very easily and gets spots of purpura periodically on his arms. He also had a bad bout of pneumonia that put him in the hospital for 3 days and Scarlet Fever in those months. It was always something during that time. His blood tests show a positive ANA (antinuclear antibobies) as well as a-typical lymphocytes, an increased Sed Rate and mild anemia. All these things point to an autoimmune disorder--possibly Lupus. He has been to a pediatric rheumatologist a few times and we are writing down every symptom he has and she said eventually we might be able to piece everything together for a diagnosis (it takes people up to 10 years to get a diagnosis of Lupus). I am holding out hope that Lupus is never a diagnosis but it sure is heck not knowing what the future holds!)!

So, here we are now adding tics to the mix of health issues! But, that doesn't change the fact that he is the sweetest and coolest little guy in the world! I love him so very much and I know we will get through anything and everything that the future might hold! Danny has me along with an awesome dad and 2 teenage sisters who adore him more than anything.

I am glad to be here to learn more from those of you who unfortunately are dealing with the same issues. I hope to also be able to give support in the future!

Thanks!
Posted on 05/16/08, 03:05 pm