Trying to get my daughter with a seizure disorder on epidiolex

Posted by mmas @mmas, Jan 27, 2019

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.

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

pamelastewart5 | @pamelastewart5 | Jul 15, 2019

In reply to @jakedduck1 "@pamelastewart5 Good morning, That’s what I thought but my math ranks right up there with my..." + (show)

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.

Ethan McConkey, Moderator | @ethanmcconkey | Jul 26, 2019

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/

pamelastewart5 | @pamelastewart5 | Jul 27, 2019

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

Leonard | @jakedduck1 | Jul 27, 2019

In reply to @pamelastewart5 "I always appreciate Jake's input and knowledge. Thank you, Jake!" + (show)

@pamelastewart5
Thank you for the kind words.
Jake

View More View Less

Please sign in or register to post a reply.