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.

Isn’t it pretty much the same as Charlottes Web? You can purchase that online and there are many who have had success with it in kids. My son (24) uses a CBD product and feels like it helps. Good luck!

@ckeys

Isn’t it pretty much the same as Charlottes Web? You can purchase that online and there are many who have had success with it in kids. My son (24) uses a CBD product and feels like it helps. Good luck!

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No, this is prescribed by a neurologist and is a pharmaceutical. We have tried charolettes web and had no luck.

@mmas
Since Epidiolex has been approved for Dravet syndrome and Lennox-Gastaut syndrome can’t your Neurologist prescribe it for her for off label use. Most drugs today seem to be used for off label uses anyway.
I assume no other Anticonvulsant or cocktail has been effective. Although Epidiolex is far from the wonder drug some have claimed it to be. It’s effective about 25% of the time. Hardly the miracle drug those of us with Epilepsy were hoping for.

Liked by crsty40

@jakedduck1

@mmas
Since Epidiolex has been approved for Dravet syndrome and Lennox-Gastaut syndrome can’t your Neurologist prescribe it for her for off label use. Most drugs today seem to be used for off label uses anyway.
I assume no other Anticonvulsant or cocktail has been effective. Although Epidiolex is far from the wonder drug some have claimed it to be. It’s effective about 25% of the time. Hardly the miracle drug those of us with Epilepsy were hoping for.

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Yes, we were trying but my insurance wouldnt approve it and it’s super expensive but….after 2 denials with more appeal they approved it a couple days ago. Will keep you all posted once we start it!

@mmas
That’s fantastic news!!! I think I’m as happy as you are that it was approved. I will be thinking of you and your daughter. Hopefully she will be rid of those nasty seizures forever. I heard that medication costs over $30,000 a year. Not sure if it’s true though. If the insurance ever stops paying for it you can ask the manufacturer to help. They do occasionally give patients expensive medications for free or very little. Looking forward to hearing from you with positive news.
Blessings, health & happiness to you both,
Jake

@jakedduck1

@mmas
That’s fantastic news!!! I think I’m as happy as you are that it was approved. I will be thinking of you and your daughter. Hopefully she will be rid of those nasty seizures forever. I heard that medication costs over $30,000 a year. Not sure if it’s true though. If the insurance ever stops paying for it you can ask the manufacturer to help. They do occasionally give patients expensive medications for free or very little. Looking forward to hearing from you with positive news.
Blessings, health & happiness to you both,
Jake

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Yes, it’s very expensive but they have a assistance program so actually we only pay $25 each refill till we hit our deductible

@mmas

Yes, it’s very expensive but they have a assistance program so actually we only pay $25 each refill till we hit our deductible

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@mmas
That’s great, glad you got it. Is it helping or is it too soon to know.
Health and happiness,

@jakedduck1

@mmas
That’s great, glad you got it. Is it helping or is it too soon to know.
Health and happiness,

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Starting today at low dose will probably know in a couple weeks to months if it is but will keep you all posted!

@mmas

Starting today at low dose will probably know in a couple weeks to months if it is but will keep you all posted!

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Hi, @mmas – here's a Mayo Clinic article on the drug approved by the FDA for epilepsy you are taking about, the liquid medication that's sold under the brand name Epidiolex https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treatment-with-medical-cannabis/

How's it going so far with your daughter?

@lisalucier

Hi, @mmas – here's a Mayo Clinic article on the drug approved by the FDA for epilepsy you are taking about, the liquid medication that's sold under the brand name Epidiolex https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-treatment-with-medical-cannabis/

How's it going so far with your daughter?

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Haven’t noticed anything good or bad since we have started. Only been a week and a half so will have to give it more time before we really know if it’s helping. Will keep you all posted!

@mmas

Haven’t noticed anything good or bad since we have started. Only been a week and a half so will have to give it more time before we really know if it’s helping. Will keep you all posted!

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@mmas
Obviously, every day seizure free is good. What type/s of seizures does your daughter have. What has her usual seizure frequency been?
Best of luck to you both,
Jake

@jakedduck1

@mmas
Obviously, every day seizure free is good. What type/s of seizures does your daughter have. What has her usual seizure frequency been?
Best of luck to you both,
Jake

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She has weekly seizures in sleep but has had 2 brain surgeries at the age of 1.5 and 2.5. She is 6 now. Before surgeries seizures were more like daily. She has tried probably a dozen meds to tame them but they are winning. Would LOVE for her to be seizure free especially given what we have been through. She has developmental delays and physical deficits from surgery. I hate seizures!! They are so unpredictable. Just frustrating!! As we all know. Hanging in there and she is happy so that’s the positive! Thanks for listening!

We are a little over 2 weeks on epidiolex and she did have her weekly seizure last week but we are only at 1/2 dose in which we can be giving so there is hope. Will continue to to keep you posted!

We tried epidiolex but it failed my son. Hope it works for you

Does your son have a genetic disorder related to his seizures? Just curious since it’s “approved” for certain types of genetic disorders.

What other meds has your son been on?

@mmas

Does your son have a genetic disorder related to his seizures? Just curious since it’s “approved” for certain types of genetic disorders.

What other meds has your son been on?

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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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