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Medical Forum / Diseases and Disorders / Epilepsy / September 2006epilepsy and ataxia
hi all, my son who is now almost 17 years old suffers from epilepsy since he was 9 yo. unfortunately his epilepsy was not under control with single medication and in every new drug he experienced new side-affects. we tried almost all antiepileptic drugs and he had tremors, weight gain and some form of ataxia. After HEPTANTOIN (Hidantin) his seizures was almost in a status form. as soon as he moves his body he was starting to shake and shaking was triggering his seizures. we cut of Hidantin and seizures lessened. now it is 20 months he can not walk on his own, he can not eat or drink alone because of ataxia while in the last 6 months he had no seizures.He is now on Rivotril Kepra and Zonegran. we need to find a very good neurological clinic probably in USA . the doctors in TURKEY (where we live) couldn't make diagnosis. CAN ANYONE HELP US TO FIND THE RIGHT CLINIC. > hi all, > my son who is now almost 17 years old suffers from epilepsy since he [quoted text clipped - 13 lines] > > CAN ANYONE HELP US TO FIND THE RIGHT CLINIC. Welcome to our group Sirday. Sorry to hear of your young ones problems with medication. I looked at the AES website (American Epilepsy Society) http://www.aesnet.org/Visitors/PatientsPractice/Index.cfm When I look at Patients Practice and click on Find a Physician it takes me to the Epilepsy Foundation website (Finding a Physician Who Specializes in Epilepsy Treatment) These doctors are physicians in clinical practice who are active members of the American Epilepsy Society. http://www.epilepsyfoundation.org/drsearch.cfm >From there you can search each state. Take care, Julie > > hi all, > > my son who is now almost 17 years old suffers from epilepsy since he [quoted text clipped - 27 lines] > Take care, > Julie >> hi all, >> my son who is now almost 17 years old suffers from epilepsy since he [quoted text clipped - 27 lines] > Take care, > Julie Permit me to add to that here if I may, Julie, and it will keep all the sites together in one post. The following site gives an introduction http://www.naecepilepsy.org/ and the links there such as http://www.naecepilepsy.org/centers/centers.html include a clickable map or one can continue down the page and browse through the listings. The Mayo Clinic has a very good reputation as does another one in Boston that was mentioned here in recent times, I believe. I can't speak personally about any of them, but one can be assured that they wouldn't be on these lists without good credentials. Germany is closer than the US and perhaps more convenient for someone in Turkey and there are some there that might be considered such as <http://www.evkb.de/deutsch/KlinikenundInstitute/EpilepsiezentrumBethelEpilepsiek linikenHausMara/English/page.html#Introduction> I would be willing to help. There is a device called a cyberonics vagal nerve stimulator which helps stop siezures. Phil > hi all, > my son who is now almost 17 years old suffers from epilepsy since he [quoted text clipped - 13 lines] > > CAN ANYONE HELP US TO FIND THE RIGHT CLINIC.
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