Spike and Wave

Taylor had a good day yesterday. She ate both meals and drank 1.5 bottles, with the remaining ones going through the tube. Main activity was her EEG. It was at lunchtime so Francis was here and came down to the EEG lab with us and waited until all the electrodes were attached. Then he had to head back to work with it being monthend. Taylor was lying nice and still for the test so instead of being up on the bed with her I put the bedrail up and sat down by the technician so that I could watch the screen. I've never done that before. Without knowing what a normal EEG looks like, I watched the screen and thought to myself..."her poor brain is crazy".

I asked the technician what the seizure activity looked like so she pointed it out to me, which was nice because I don't think they're really supposed to tell me anything. As I continued to watch I was shocked at how much seizure activity I was seeing on the screen while Taylor was sleeping. Every minute, sometimes a handful every minute.

It wasn't until this morning that I saw Dr. Bello who shared the results. There is markedly increased seizure activity from the last EEG which was just 11 days ago. Continuous spike and wave activity. Not what I wanted to hear. He told me not to get discouraged, this happens, and it's not necessarily a regression. But we need to get her back to where she was 11 days ago. So his recommendation is to proceed with starting Taylor on Phenobarbitol. Valproic Acid is apparently another very good option, but I do not like the side effects of that one at all, fatal liver failure...no thank you. So we're going with Phenobarbitol, that will start tonight.

So, now we're here for the rest of the week for sure, he wants to see how Taylor responds to the new drug, and they'll want to do another EEG at the end of the week.

Next up is the swallow study at lunchtime, hope that has better news for us.

I know he said not to be discouraged, but I can't help but be.