If all continues to go well we will be out here tomorrow! We have an MRI scheduled tomorrow morning around 10, after that we will be discharged! The MRI is just to be sure that nothing physical has showed up on her brain since her last MRI - chances are small there is, we just want to be sure since her left side is "worse" than her right side on the EEG - worse as in more A-symmetric. Overall, Neuro and Peds are happy with her progress and don't see a need to still be here.
With that being said, Abigail had 8 seizures today - that's just too many for me to feel comfortable with..We did double her dose of her vimpat tonight and will see tomorrow how things look by the time the MRI is done and see what we are looking at seizure wise there. The neuro did say it would take about a week before he would want to increase the dose again (outpatient) but I don't know if we stayed here a few more days to monitor her a little longer if they would increase it sooner seeing as how we are her in the hospital to monitor her. IDK - 8 is just too many - but if the end plan isn't going to change then there is no point in being here because we can play with the medicine at home. I'm just very apprehensive to leave with 8 seizures daily--that just doesn't sit well with me. It is a far cry from 40 a day - but we started with only 8 seizures a day before we ended up here in a state of encephalopathy! I just don't want to get to that point again! I did NOT like anything about that whole situation ONE BIT! I just don't even want to think about the possibility of getting to that point again so I want to stop it before it begins. IDK I'm still just so frustrated that Topomax was working so dang well and now we are having a hard time finding something, anything, to work!
Other than that she's beginning to act more like herself..the seizures aren't allowing her to be as alert as I would like to see and all of that - but I can see glimpses of my AbiNormal
That's all I got for you guys right now - just a short update.
This is AbiNormal
My daughter Abigail was born having seizures. This is our story of diagnosing the problem and living with epilepsy.
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