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@mmas

The first 2 weeks she didn’t have a seizure but since then she has had her weekly seizure despite the increases. She is almost at max dose. We can make one more increase. Waiting to get bloodwork results back. I wish it worked because she seems to not have any side effects from it. Will let you know after we increase it again.

She has her seizure around 1am and wants to be up for the day. She will sometimes go back to sleep after a couple of hours but I’m so exhausted for a couple days after. Our neurologist suggested giving diastat but I really don’t want to be giving her that weekly. Her seizures last about 5 mins and by the end she is really awake and “manic-like”. Wish there was another type of rescue that wasn’t rectal. Just seems invasive to do every week. If anyone has any suggestions?

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@mmas
I’m sorry to hear the Epidiolex isn’t working. Have you tried Intranasal midazolam (Verced?) Does your daughter have cluster or status seizures? If she doesn’t this medication probably isn’t right for her. I’d ask the Neurologist though.
Here is a video of how to use Versed:
https://m.youtube.com/watch?v=KBvFywzUD28
Fingers crossed improvement is near,
Jake