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Hi there. I have had epilepsy since I was a baby. I found out only a few years ago that what I have is temporal lobe epilepsy. I have SPs, CPs, and TCs. Yippeee. My doctor would like to remove the malfunctioning part of my brain. I am not in a hurry to do that. My brain may not be reliable, but I sort of know how to work with it the way it is. I don't want to take any chances. And I'm scared of having my head cut open.

One of my two daughters also has epilepsy. She has febrile seizures, and I am trying to find out if some of the strange experiences that she describes to me are SPs. She is eight years old.

I advocate for my kid at her school and I educate people wherever I go. I am not, however, one of these folks that feels like epilepsy is some blessing and gives their life meaning. I think it stinks.

Nice to meet you.
 
Hi! Glad to meet you!! Do you advocate just for epileptic children or special ed in general? I've been a special ed parents advocate and believe that a strong parent is a child's best ally.
 
Hi Spacedoubt! Welcome to the forums.

You didn't mention what treatment(s) you are using (or have tried). I'm guessing that your seizures are not fully controlled.

Did you see the news article mentioned in this thread about febrile seizures?

I think having seizures stinks too, and I don't even have them (my wife does).
 
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