>> Friday, September 30, 2016
Electrical Status Epilepticus of Sleep looks like this:
Hell of alot of seizures isn't it? All while asleep. The few hours of peace are when he is awake. The seizures tire him out so he sleeps a lot which causes more seizures. Viscous cycle. Lately, he has not been responding too well to rescue medications and we can speculate what that means but speculation does not lead to treatment. So while I wait for his appointment to be confirmed, I use the Quick Capture every 10 minutes and hope his oxygen stays stable. If it weren't, he would be in the ER, but in the ER they knock him out with phenobarbital and he is unconscious for days on end just to calm his brain down. With ESES...will it calm down while he is unconscious? Who knows really and it's a risk of more damage than good...remember when he almost died because of too much pheno? Ya, me too, let's not do that again.
So we patiently wait for this cycle to improve and if it doesn't....he goes to the ER. He has until tomorrow and then we hope for the best and turn him over to the Emergency Room and I mind my p's and q's to not strangle anyone for arguing about NO EEG and Ativan.
He's a tough kid but how tough? :(