Epidiolex

Posted by mmas @mmas, Sun, Jan 27 6:11am

Has anyone tried epidiolex? Trying to get my daughter on it but has only been approved for certain genetic disorders associated with seizure which she doesn’t have. Hopefully it gets approved for all seizure disorders soon.

@jakedduck1

@pamelastewart5
Good morning,
That’s what I thought but my math ranks right up there with my cooking! I was calculating, well trying to calculate the max dose for his weight and I get 1,180mg. @ 20mg/kg.
Any mathematicians out there?
Do you know what the maximum dose for Caleb is? My guess is he’s taking 10mg/kg but that’s only an uneducated guess.
Jake

Jump to this post

Thanks, Jake. We will bring up the possibility of increasing his dose. At this point, he is status quo–about the same as he was before we started the Epidiolex, when he was on Dilantin, Celontin, and Med. Cannibis. The Med. Cannibis is now gone. He has 1-3 seizures a week when he sleeps, dozes a lot during the day, and bears weight with assistance.

Liked by Leonard

REPLY

This week's member spotlight is for one of our most active members @jakedduck1. He's always willing to offer his support and share some laughs.

Transforming stigma to acceptance: Meet @jakedduck1
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/transforming-stigma-to-acceptance-meet-jakedduck1/

Liked by Leonard

REPLY

I always appreciate Jake's input and knowledge. Thank you, Jake!

Liked by Leonard

REPLY
@pamelastewart5

I always appreciate Jake's input and knowledge. Thank you, Jake!

Jump to this post

@pamelastewart5
Thank you for the kind words.
Jake

REPLY
Please login or register to post a reply.