Friday, October 25, 2013

Daytime seizures are back

John has been suffering a lot of night seizures, but hasn't had any daytime seizures for quite some time.  Of course that all changed on one of the very rare evenings that Yoshie, Maya, and I got out without John.   We got the call just after ordering our food.  It's almost comical.  But, we have a great caregiver that was watching John and she handled it all just fine so we were able to enjoy our time out.


John is big enough now that we cannot carry him to bed when he has a seizure.  So, he got a nice long nap on the kitchen floor.
We ARE very slowly decreasing his ONFI.  This is a benzodiazapene and withdrawal seizures are pretty common.  We're hopeful that is all it was and it doesn't happen again.  We really don't want to have to add that drug back in.


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