We are going in next week for an EEG to determine if some of the changes in Macayla recently are seizure related. Every time she tries to sleep, she has multiple rhythmic jerks that flow through her body. It can sometimes take her an hour to two hours to fall asleep because of them. We think that the jerking is myoclonis and we want to see if it is indeed and if her seizures are changing form or are we dealing with something else. We all have myoclonis jerking when we fall asleep sometimes. It's that sudden twitch you may feel when you're drifting off to sleep but this is not epilepsy. Macayla, on the other hand, has multiple twitches for an hour or two and even some after she falls asleep. She has been waking up at 2:20 a.m. every morning and it takes until about 3-3:20 to get her back to sleep because of the twitching. The jerking also follows patterns sometimes. The other night she would do it in a sequence that started in her arms, then her legs, then her left shoulder, and then she would turn her head. She repeated this pattern about every five seconds for thirty minutes. The next night the pattern would be her arms then her legs at about the same interval. Jenny and I know that you don't want to be on the receiving end of one of those leg jerks! Macayla can kick!
Maybe her seizures have not been down like we thought, but that's what the EEG can tell us.
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