13th grade ends and Daybue update.

Edda’s last day of school was on Friday. And now begins the summer. It was a nice year for us at Edda’s school. We are very lucky to have had a 3 teacher team in place for many, many years – through the pandemic. Without them, we would be lost.

We are, unfortunately, having some trouble with Daybue. Edda usually has one night time seizure a week while being on Keppra and Trileptal. This week, her first week on Daybue, we saw a seizure almost every day. Monday and Tuesday were nighttime seizures. Wed, Thurs and Friday were daytime seizures. The daytime seizures are very unusual for Edda – we haven’t seen then in over a year. Yesterday, Saturday, we were out for dinner and Edda seemed to have that seizure-y aura about her, but we didn’t see one occur. Anyways, we are holding at 1/3 dose for another week. The specialty pharmacy said they knew seizures were a side effect so it wasn’t surprising, but they had no data to indicate whether it is a long-lasting side effect or if it fades with use of the med. We have an email out to our neurologist at CHOP, but haven’t heard back yet. So we are holding steady. Her poop tho, is completely fine.

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