Could you please tell me the name of a Doctor that sees children under 4 with Dystonia? Everyone I'm led to sees adults and I'm not finding any helpful results for my 2 1/2 year old daughter. She has Dystonia caused by a prescription medicine called Trazadone. That was confirmed by Dr. Abe Chutorian in New York. We live in Kentucky, but will travel where ever. We have also seen Dr. Cynthia Camilla in Chicago. Theses 2 Doctors are both adult specialists. My daughter has this condition all over her body and it seems to be getting worse and more painful spasms. She is currently on Artane but it doesn't seem to help at all. We are desperate for a Doctor familiar with children with this condition. I feel helpless and lost. I am also intersted in Hyberbaric Oxygen Therapy. Please tell me if there is a clinic close to Nashville, TN. that offers this treatment?
Thank You, Julie Mom to Gracie
Case reports in the literature have demontrated that some of the patients with trazodone related dystonias get better with removal of agent or treatment with benadryl IV in the acute setting. I am concerned as your daughter's condition is progressing despite the assumed removal of trazodone, that she may have something else such as a genetic abnormalitiy or metabolic problem. I agree, she should definitely see a pediatric neurologist for appropriate workup. Drs. Friedman and Bruce Cohen here at the CLeveland CLinic are outstanding peds neuro docs that take care of dystonic children. Baclofen pumps, deep brain stimulation are some of the treatments that we offer here. I don't know of any clinic near TN offering hyperbaric oxygen therapy, but that doesn't mean there isn't one. Your daughter needs the workup. I would not be satisfied with the diagnosis of trazodone, unless everything else was normal. Good luck to you.
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