Update # 13

Brody and I are home for the night but Zane and Abe are at the hospital. Zane's EEG went well in that it definitely recorded some seizure activity. Zane had 4 myoclonic seizures just during the 20 minutes it took him to eat lunch today. I lost count but he probably had a dozen or more during the 24 hour test. It is still unknown whether or not the Trileptal is causing the myoclonic seizures. It is possible that this is the course Zane would have taken without the medication. Another EEG about a month from now could give Dr. Crisp that answer. In the meantime Zane will be tapering off the Trileptal and starting a new drug called Zonegran. The doctor warned us that Zane may have some seizures while this transition is taking place because there will be a period where he isn't getting good coverage. Unfortunately the new drug is only available in a capsule so we have to break it open and add it to some juice or food to hide the taste. Eventually we will work with Zane on swallowing pills. They are giving Zane his first dose of the new medication tonight and that's why he is at the hospital until tomorrow. They just wanted to observe him as the transition begins to make sure he doesn't have a reaction.

He was hooked up to the EEG until after 2 today. Then he got to play in the playroom until dinner time. He was very energetic, with good reason. After dinner he continued bouncing off the walls so Abe was going to take him back to the playroom before bedtime. I could certainly tell Zane was getting tired of having visitors and of being there in general, I imagine. As the day went on doctors and nurses were greeted with "I'm trying to watch my show" rather than a chipper "hi, I'm Zane". But all in all he has handled this magnificently. We are all looking forward to our weekend...at home!