It's been a year since Charlie starting having seizures. I remember clearly how scared I was that first time. My barely one year old baby boy shaking, not a ble to breathe, those minutes seemed like a lifetime of worry. Now seizures are so commonplace in our life we barely stop for one. Even on two different seizure medications twice a day Charlie still has seizures regularly.
This Memorial Day weekend, like last year, Charlie was sick with a fever. Fevers are his biggest trigger. The seizures are bigger and more numerous if his temperature goes up. Today I'm alternating between Ibuprofen and Acetimenophen to try to keep the seizures away.
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2 comments:
I so completely understand this. I've written a few blogs about dealing with seizures, but even with that it's not easy to explain to people the day in day out caregiving that goes on. I know it's different for everyone, and between a child and adult, but it's still just as scary no matter how common. The frustration of dealing with doctors who blow them off as not a big deal, as their brain is damaged (however temporary) by seizures they aren't taking seriously in the ER. The unknown that comes with not having them controlled, or not knowing if they are truly controlled or not.
Good luck. Keep up with the doctors. If you want hints about brain rehab, let me know. :-)
I'm sure you've already checked out all possible treatments, but there is a diet (ketogenic??) that kids can be on for a while and in some cases it stops the seizures. I have two friends that had great success with it. They admit kids to the children's hospital here for the first week, get them on it, train the family then send them off. I don't remember how long it lasts, but it seems to me it's about six months or so. I'm probably telling you something you already know. Good luck!
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