Quick update. We are still in the hospital.
Emily had a few big seizures on Thursday and for some reason she has a very high tolerance to most medicine so we had to come back to the hospital.
She was doing really well and we were getting ready to come home yesterday. They took her IV out, Joe loaded up the van, and I got her dressed then she started with her twitching episode. She will slightly shake/twitch her feet and mouth for just a few seconds (we know this is seizure activity from her latest eeg) and then stop, recover and then repeat. Normally this will go on anywhere from 1-3 hours at the longest but this time she did not stop for almost 7 hours. It was not a constant seizure but it is still bad.
The doctor ordered phenobarbital and it worked. She stopped and slept all night. Those of you who know Emily know how resistant to meds she is. Nothing ever makes her sleepy and this did. So sleep was had by all!!
She is still pretty sleepy today but having a marathon of seizures and a new medicine is enough to make you sleep for days.
Also we have taken her off her sabril(vigabatrin). It did not make a difference with her seizures.
We have also increased her ketogentic diet to a 4:1 ratio. It means more fat intake because she is not passing enough ketones.
We are hoping to go home in the morning.