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.

@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

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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.

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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/

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

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@pamelastewart5

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

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@pamelastewart5
Thank you for the kind words.
Jake

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