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EEG shocking reults regarding inability to wake early
Mon, 10/27/2014 - 12:42My 17 year old daughter with generlized epilepsy recently completed a 3 day ambulatory EEG to try to determine why she is sometimes completely unresponsive when we try to wake her in the mornings. This happens sometimes once a week, sometimes 4 times a week. She's very far behind in school (although a very motivated honors student), so this is very stressful for her. We were sure she was either being over-medicated with her Keppra, or she was having nocturnal seizures. According to her EEG reading, neither is the case. Her results are in line with her diagnosis but no seizures were captured. Blood tests show her keppra level is normal and they don't believe that is causing her extreme sleep tendencies. Here's the awful part - they said that every time I had written in the log during the EEG that I was trying to wake her unsuccessfully, her brain is actually completely awake, that she is choosing not to respond, and that is a behavioral issue...????!!!!! This could not be more wrong. She loves and misses her friends, her boyfriend, is afraid for her future because of being so far behind (SHE HAS A 504 PLAN BUT IS 27 ASSIGNMENTS BEHIND), she hates missing school and feeling lost when she returns, and is humiliated and hurt that anyone would think that she is doing this on purpose. What is going on with my kid and where do we go from here?
That was according to two
Submitted by Anonymous on Mon, 2014-10-27 - 16:52
That was according to two neurologists (not her usual epileptologist). She was so upset, but I told her they have no ideas who she is. They are just looking at a bunch of squiggles without having the context of knowing her at all. They said a sleep study was unnecessary because they can see all of her sleep cycles in the EEG. I will definitely look into Todd's paralysis. I've never heard of it. I'm in the process now of getting notes and results sent to a doctor at Cleveland Clinic who specializes in sleep related issues in epilepsy. I think he's our best hope.