We're home now. Jack was so out of it at the appointment -- I am sure he's still post-ictal from last night's seizure.
The doctor is going to change his medications and he ordered an EEG as well. We're doing it in stages -- first wean tegretol at the same time we're going to be starting Keppra...we'll then wait until that process is done (4 weeks), see the neuro again, then start to wean the valproic acid. We also need labs as well. My head is spinning...i left with so many orders and prescriptions...and all I want to do is cuddle with my boy.
Jack has been drooling excessively and we noticed patches of hair missing from the back of his head -- all are signs of too much valproic acid. So basically we need to find a medicine that works.
Jack was so tired and pale I decided not to go to the ortho appointment. The same ladies who checked us in for the neuro also do the check in and scheduling for the ortho and once they saw him they agreed he looked like he needed to go home!
I hate all of this and I hate how utterly drained we all are after these things. We're going to be hanging out in "he could have a seizure at any moment-land" for a while until the meds are worked out. Even then Keppra may or may not work. Let's pray it does!
Anyway, thank you for your thoughts. I will keep you updated!
Here's to hoping the change in meds works and he stops losing his hair! I haven't had much time to post lately, but know you guys are always in my thoughts!
ReplyDeleteSo sorry to hear about Jack's seizure and med changes. I hate seizures too! They wear out the whole family.
ReplyDeleteWe've had plenty at our house too... ending up in the ER twice.
Not fun at all.
Feel better soon little man. I hope the Keppra improves things... Abby is on it too.
-Patty