We had been anxiously awaiting January 30th, so we could go back to CHOP for a new EEG and an appt with Emily's neurologist.
I took Emily to the EEG first. This was the first time (out of two previous EEGs) that I could see the screen and watch her brain waves during the test. So I couldn't really tell if it looked better or worse than before. The woman performing the EEG was typing comments during the test, and would click on a button when Emily moved. When she moved, the waves would spike, but otherwise they seemed pretty calm to me. As the test was almost finished, the technician said, "I don't know what her EEG looked like before, but today it looks like how yours or mine would look." Good news!
We then went to wait for the neurologist. They took us in fairly quickly which was nice, and Emily was so good. She slept most of the time we were there and we were there for about 5 hours total. I tried to give her a bottle, but I don't think she liked it cool, because I could only warm it up in the bathroom sink!
Anyway, the neurologist was pleased with her seizures decreasing after we started Topamax in addition to upping her ACTH dose. She got the EEG results and it was NORMAL!!!! The best news! The ACTH is doing what it is supposed to do - normalize the EEG - and the seizures might just be lagging behind a bit. But they said they would rather her EEG be normal and still have some minor spasms, than still have hypsarrythmia on the EEG. Yeah!!!!!
We had to get blood work after that, yuck! But again, Emily was a real trooper! She will continue on the ACTH for about another month, slowly weaning each week. We will continue to increase the Topamax at the same time.
So there was good news all around and we went home happy!!