After a blissful couple of days with Josie down in the single digits of seizures per day, her number has jumped back up into the 20's. Based on this information, the doctor has ordered another EEG that they'll put on in the evening so they can catch her usual morning cluster of seizures after she wakes up.This also means another night in the hospital which Josie is not going to like. Hopefully we can get in and out quickly and she can get some sleep. They are also going to try and catch these on video so the neurologist who hasn't actually seen Josie yet will get a chance to see the seizure and hopefully get a better idea of what type of epilepsy she has.
Speaking of that, the doctors think it's either MAE or CAE and have referred us to this website which has been helpful emotionally: Doose Syndrome It's reassuring that others have had to go through this but at the same time, I don't want to fully realize or accept that our little Josie has to deal with this forever. Or for a while. Also, seeing that it can get worse is hard. Trust me, I realize and appreciate that there are worse things but it's pretty hard dealing with what's on our plate now.
So for now, we are doing lots of research, waiting for the EEG appointment and Josie is staying on the Clobazam at 5ml twice daily. Poor kid has a cold on top of everything. Yuck-o!
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