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.

@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

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@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

Jump to this post

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!

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

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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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@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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@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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