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2 year old with siezures what should I do

Wed, 04/04/2018 - 22:24
My daughter got siezures at 5 months old. She had about 32 to 38 in a 24 hour period. She was put on keppra and phenobarbital she stopped having seizures so they slowly took her off the meds. By the age of 1 she was off meds and was fine. She started getting siezures again and she's had 5 different types on a paramedic ride to the ER. The drs keep doing MRIs and EEGs but they don't know what is causing them, so they say. She gets atonic, aura, nonconvsive, and at least 3 other types. She is now 2 she has had ear infections and strep throat, she gets clammy hands and feet and she also will go completely silent for hours or days. She has also had a blood spot on the left side of her brain since birth that's not going away. She is behind in all developmental stages as well. She was randomly called in to the drs office yesterday for a iron and lead test ( is that normal just randomly and by the nurse not by the Dr). Her neurologist won't do a test to check for meningitis. He says "meningitis doesn't work like that." But she's seen maybe 3 neurologists and they all do not know what is causing it ... They keep guessing she still gets aura while on the meds and they won't change the dosage or the meds ... I know something isn't right but no Dr will do other tests ... What should I do ???

Comments

You need her to see an

Submitted by Amy Jo on Thu, 2018-04-05 - 15:44
You need her to see an epileptologist, they deal with hard to understand epilepsies all the time. What’s your closest well regarded children’s research hospital? Most people don’t find out the cause so that’s not unusual although they are learning more about genetic forms of epilepsies all the time. Plus there are some unusual epilepsies relating to metabolism, inflammation and such. 

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