So we got up bright and early on Friday morning and Connor had his EEG. We were there a bit longer than we expected because our hospital is the type that gives you a pager and has you wait in a reception room until you are paged to go back to the EEG area. Apparently it really helps this system work if the receptionist actually turns the pager on, which she neglected to do in our case. So we ended up waiting for about forty minutes before they made an announcement over the hospital loudspeaker, we went back and they discovered why we hadn't responded to the six times they'd paged us. Whoops. The EEG tech said she'd be having a "discussion" with the receptionist, and I got the impression from her tone of voice that they would not be having a pleasant chat about the weather. Oh well.
But anyway, once we finally got back into the EEG room and hooked Connor up, he cooperated and had a seizure about twenty minutes into the exam. So we were able to stop shortly after that, since the doctor had what he needed. While I don't like that Connor is having seizures, I'm glad that we were able to capture one during the EEG so we don't have to go back and do a 22 hour study on Tuesday. Our girl isn't quite ready for me to be away from her for so long yet, and the less time Connor has to spend in the hospital, the better.
So they determined that these are, indeed, seizures and not some sort of new weird thing I'm making up about my kid, which is always nice to hear. What was not so nice to hear is that Connor's brain is showing epileptic activity between seizures now. Basically this is a progression of his seizure activity. Not good.
So we've started on a new seizure medication, called Rufinamide, and we'll be working up to a therapeutic dose over the next couple of weeks. Then once we're up to the right dose, if it's effective we'll work on coming down off of one of his other seizure meds. Four seizure meds is a bit too much for the kiddo to be on without starting to worry about nasty side effects.
Until he's up to a therapeutic dose, we can expect to see more seizures like the ones he's having now. He had five today, and was pretty worn out by bedtime. Please keep your fingers crossed that this new med will give him some much needed rest!
2 months ago