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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Epidiolex Users Would You Share Your Experience ?

A MyEpilepsyTeam Member asked a question 💭
Indianola, IA

We have been given approval to start epidiolex and understand we will be jumping through the insurance hoops. Keppra had been a debilitating med for my son-depression,anger,weight gain.
I’d like to hear from others that have used this fda approved cbd.

November 24, 2022
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A MyEpilepsyTeam Member

That’s the first thing I said- fiber and probiotics . I don’t even know where you’d get banana flakes. I will be checking up on our progress toward getting this med on Monday so I’ll ask about it.

November 27, 2022
A MyEpilepsyTeam Member

I also eat nuts, different dried fruits, sesame seed sticks, etc. I did not think of Banana Flakes. Would something like Wheatena help? It has a lot of fiber.
Leslie

November 26, 2022
A MyEpilepsyTeam Member

Jeanne The epidiolex pharmacist told us that the cannabinoid receptors are in your brain and gut so could cause loose stool for some. She has parents give their young dried banana flakes and it remedies the issue. Im not sure where you get it, ill ask next time i speak with her.

November 26, 2022
A MyEpilepsyTeam Member

Now i think they are dosing by weight and then adjusting according to your needs. My 18 year old is 6ft1 and a big guy so his does will be big im sure. They did say they compound right in their own pharmacy so can make the strength higher/lower without you needed to take lots of it. So more concentrated i believe.

November 26, 2022
A MyEpilepsyTeam Member

How old is your daughter? You have to let the Doctor know about her boy size and weight. When I was in school, the Doctors gave me an "average dose". That was much more than I should have gotten. While in High School and all the girls were complaining about being on diets, I did not even weigh 100 pounds. This is important.

Leslie

November 26, 2022

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