It' been a reasonable week for Elijah, no more significant seizure since last week and we have had no change in his medication. We have however noticed that Elijah seems to be having some seizures as he goes off to sleep a couple of people posted on the Angelman Listserve talked about their kids having twitching/myoclonic seizure as they go off to sleep or in fact during their sleep. We have noticed since the last couple of big clusters of seizure he has had in he last 10 weeks elijah is having these. We recognised he "twitching" as seizure activity when we watched a DVD about Angelman Syndrome and the section on seizures shows a little girl with the twitching - fingers, toes, hands and feet. :Last night when he was awake at 2am I noticed he was having the twitching as well both when he was awake and after he closed his eyes as well. This is something that we need to talk to the Specialist about as I wonder if this is partially why he wakes up during the night apart from just having a full nappy. I wonder how much this activity is going on during the night. We might also try and get some overnight video footage.
The other thing we are considering is a wireless camera for his room so we can observe him easily either via a monitor or record his sleeping or not sleeping for our records or presenting to medical staff. The gear will will cost $3-400 and so we are exploring some funding avenues for this.
TBC..........
Darren
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