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.

Hi, Everyone, My son, Caleb's, Epidiolex has been therapeutic for about 2 weeks. He has had a few seizures in this time, which is usual for him. When he got on Epidiolx his Medical Cannibis was discontinued. On the whole, I think he is a little less able to bear weight during transfers now. That was the one area that improved with Medical Cannibis. His drowsiness is about the same as usual. We haven't noticed any other side effects. Has anyone had true success with Epidiolex? I would love to know. It is certainly more affordable than MC. The high monthly cost of MC was draining us. But if Epidiolex doesn't work at least as well–or better–we have to reconsider all options, I guess. Will MC become more affordable in January in Illinois?
Thanks for any input.

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@pamelastewart5

Hi, Everyone, My son, Caleb's, Epidiolex has been therapeutic for about 2 weeks. He has had a few seizures in this time, which is usual for him. When he got on Epidiolx his Medical Cannibis was discontinued. On the whole, I think he is a little less able to bear weight during transfers now. That was the one area that improved with Medical Cannibis. His drowsiness is about the same as usual. We haven't noticed any other side effects. Has anyone had true success with Epidiolex? I would love to know. It is certainly more affordable than MC. The high monthly cost of MC was draining us. But if Epidiolex doesn't work at least as well–or better–we have to reconsider all options, I guess. Will MC become more affordable in January in Illinois?
Thanks for any input.

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@pamelastewart5
How much does Caleb weigh and what dose is he taking.
Jake

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Hi, Jake, Caleb weighs 130 lbs and is taking 3 ml. of Epidiolex twice a day.

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@pamelastewart5

Hi, Jake, Caleb weighs 130 lbs and is taking 3 ml. of Epidiolex twice a day.

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@pamelastewart5
So off hand do you know how many mg he’s taking?
Jake

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Hello, Jake, Caleb takes 300 mg twice a day fir a total of 600 mg daily.

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@pamelastewart5

Hello, Jake, Caleb takes 300 mg twice a day fir a total of 600 mg daily.

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@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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@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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