Wednesday, September 25, 2013

Night-time seizures

John is really having a hard time at night now.  Almost every day he will have a big seizure about 1 hour after going to bed.  He wakes up right before the seizure and is scared.  He made it down the hall one day before being taken down.
Last night the seizures continued all night.  They were small, but Yoshie estimated that she had to use the magnet 20 times to try to stop seizures.
We are at a point where we have to do something.   We have an appointment to get his VNS adjusted in a couple of weeks, and we're still hoping to find the right strain of marijuana that could help him.  In the meantime, we'll probably have to raise one of the other meds he is on.  We always hate to do that but there comes a time when we really don't have a choice.

Sunday, September 08, 2013

More seizures again

While we've never had long seizure-free periods, we had been doing pretty well lately, averaging about one large seizure per week.   For some unknown reason that has changed this week.   He had 3 nights in a row where he had a large seizure about 90 minutes after going to bed.  One of those nights he had back to back 2 minute seizures.  First time we have seen that.   Of course the first one was the night before his first day of 6th grade.   He seemed OK in the morning so he went to school and seemed to do OK.
As usual, we didn't change anything.  It's a complete mystery why these things come and go.