Matthew at CHOP

Nov 13, 10:00 AM – Matthew is at CHOP to find out if there is a specific part of his brain from which his seizures are coming. He is on a round-the-clock EEG.

This is the third day and up to this point he hasn’t had any seizures strong enough to be picked up on the EEG. Therefore they’ve decreased his anti-seizure medication – in order to provoke a seizure. Well, it appears to have worked. About half an hour ago he fell flat on his face, presumably because of a seizure. He was not injured but they now are limiting him to his bed. We don’t yet know if that seizure was strong enough to show up and provide helpful info.

Joan says, “it has been a circus this morning.” Related to the fall, “Everyone ran in the room b/c of course he is being videoed.” “They want to keep him until tomorrow.” “Trying to get Matthew to sleep” (he has got to be exhausted, Joan told me earlier he has been awake since 3 AM).

Joan asked me to put out this update because of the number of texts she has been receiving. This will be a more efficient way to keep everyone informed. Thank you for your prayers.

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