I am 19 months old and I have a seizure disorder which has not yet been diagnosed. I started having seizures at 24hrs old, I am hypotonic, developmentaly delayed and also failure to thrive. My seizures are a variety of different ones. My head and eyes deviate to the right or left and I have clusters which last sometimes for hours. I also have staring and drop seizures. After I have a seizure I cannnot use my right arm sometimes for minutes, sometimes for days. I have been on 8 meds that have not worked and the ketogenic diet. The meds that failed to work are phenobarb, lamictal, topimax, kepra ,clonopin, clobazam, acth and trileptal. I am currently taking 3 of these meds all at once to try and get some control on the seizures without any success. Because of my size and age the doctors are limited on what they can give me. My seizures used to come once in a while but the older I get the worse they get. I am having anywhere from 5 to 30 seizures a day for periods of 4 to 5 days in a row. Sometimes they will stop for a few days for whatever reason and then they will start again. I have been hospitalized once a month since I was born, this month being the worst I have been in the hospital 16 out of 24 days so far. I have had 6 MRI's, a spect scan, pet scan, spinal tap and tons of genetic testing all of which has come back normal. I have been through weeks of video EEG's which have showed spikes coming from the left side of my brain and they have captured 3 of the 5 types of seizures I have. If anyone has any information that might help us find out what is wrong with me please comment or email us. Please help my Mommy and Daddy help me.
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Thank you so much for taking the time to help this child.