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.

@595959

He has LGS which is one of the approved syndromes but his is not genetic. He has been on about 8 diff meds and combos. He is 14 and diagnosed at 2.

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Hi, @595959 – I wanted to add my welcome to Mayo Clinic Connect. Just wanted to confirm that your son has Lennox-Gastaut syndrome (LGS)? If so, this thread on LGS may be of interest, as well https://connect.mayoclinic.org/discussion/lgs-diagnosis

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@mmas
Good morning,
Just curious if the Epidiolex is helping to control your daughters seizures?
My fingers are crossed.🤞
Jake

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@jakedduck1

@mmas
Good morning,
Just curious if the Epidiolex is helping to control your daughters seizures?
My fingers are crossed.🤞
Jake

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The first 2 weeks she didn’t have a seizure but since then she has had her weekly seizure despite the increases. She is almost at max dose. We can make one more increase. Waiting to get bloodwork results back. I wish it worked because she seems to not have any side effects from it. Will let you know after we increase it again.

She has her seizure around 1am and wants to be up for the day. She will sometimes go back to sleep after a couple of hours but I’m so exhausted for a couple days after. Our neurologist suggested giving diastat but I really don’t want to be giving her that weekly. Her seizures last about 5 mins and by the end she is really awake and “manic-like”. Wish there was another type of rescue that wasn’t rectal. Just seems invasive to do every week. If anyone has any suggestions?

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@mmas

The first 2 weeks she didn’t have a seizure but since then she has had her weekly seizure despite the increases. She is almost at max dose. We can make one more increase. Waiting to get bloodwork results back. I wish it worked because she seems to not have any side effects from it. Will let you know after we increase it again.

She has her seizure around 1am and wants to be up for the day. She will sometimes go back to sleep after a couple of hours but I’m so exhausted for a couple days after. Our neurologist suggested giving diastat but I really don’t want to be giving her that weekly. Her seizures last about 5 mins and by the end she is really awake and “manic-like”. Wish there was another type of rescue that wasn’t rectal. Just seems invasive to do every week. If anyone has any suggestions?

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@mmas
I’m sorry to hear the Epidiolex isn’t working. Have you tried Intranasal midazolam (Verced?) Does your daughter have cluster or status seizures? If she doesn’t this medication probably isn’t right for her. I’d ask the Neurologist though.
Here is a video of how to use Versed:
https://m.youtube.com/watch?v=KBvFywzUD28
Fingers crossed improvement is near,
Jake

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@jakedduck1

@mmas
I’m sorry to hear the Epidiolex isn’t working. Have you tried Intranasal midazolam (Verced?) Does your daughter have cluster or status seizures? If she doesn’t this medication probably isn’t right for her. I’d ask the Neurologist though.
Here is a video of how to use Versed:
https://m.youtube.com/watch?v=KBvFywzUD28
Fingers crossed improvement is near,
Jake

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Thanks for the info and asking about my daughter. We are doing one more increase since that will be max dose. Will let you know in a week or so. If not then taking her off and trying Banzel. Ugh hate trying all these new meds and keeping her on ones that don’t work. Hopefully one day something will work!

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My 40-year-old son, Caleb, started on Epidiolex 5 days ago. It was a long procedure to get approved, but so was getting approved for Medical Marijuana. He has Lennox-Gestault Syndrome. His diagnosis is based on his symptoms and the course of his illness, which started at age 3, not on his EEG. This is the first drug he's tried which is specific for Lennox-Gestault. Insurance is covering most of the cost. He is starting at a very low dose which will be slowly increased. The dose now is not yet therapeutic. No seizures since he started Epidolex, but in recent years he no longer has daily seizures. We haven't seem any other changes yet. I will keep the group posted on his progress.

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@pamelastewart5

My 40-year-old son, Caleb, started on Epidiolex 5 days ago. It was a long procedure to get approved, but so was getting approved for Medical Marijuana. He has Lennox-Gestault Syndrome. His diagnosis is based on his symptoms and the course of his illness, which started at age 3, not on his EEG. This is the first drug he's tried which is specific for Lennox-Gestault. Insurance is covering most of the cost. He is starting at a very low dose which will be slowly increased. The dose now is not yet therapeutic. No seizures since he started Epidolex, but in recent years he no longer has daily seizures. We haven't seem any other changes yet. I will keep the group posted on his progress.

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@pamelastewart5
Hi
I was curious if Caleb was having any side effects?
In studies about 94% of patients did. The most common was tiredness.
Fingers crossed it works well for him.
Jake

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@jakedduck1

@pamelastewart5
Hi
I was curious if Caleb was having any side effects?
In studies about 94% of patients did. The most common was tiredness.
Fingers crossed it works well for him.
Jake

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Hi,
Caleb always dozes off a lot during the day, and that has not changed. He had one grand mal seizure yesterday afternoon, while dozing in his wheelchair. That is his first seizure since he started on Epidiolex. His dose is still low. No other changes, bad or good, so far. I hope this works.
Thanks for your interest!

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@pamelastewart5

Hi,
Caleb always dozes off a lot during the day, and that has not changed. He had one grand mal seizure yesterday afternoon, while dozing in his wheelchair. That is his first seizure since he started on Epidiolex. His dose is still low. No other changes, bad or good, so far. I hope this works.
Thanks for your interest!

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Caleb's Epidiolex is now at therapeutic levels. So far, no seizures but now improvements in functioning either. We will see . . . .

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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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