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Tue, Feb 26 2:05pm · Epidiolex in Epilepsy & Seizures

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?

Mon, Feb 25 6:12am · Epidiolex in Epilepsy & Seizures

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!

Tue, Feb 19 4:10pm · Epidiolex in Epilepsy & Seizures

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!

Sat, Feb 9 6:03am · Epidiolex in Epilepsy & Seizures

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

Fri, Feb 8 8:21am · Epidiolex in Epilepsy & Seizures

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

Sat, Feb 2 5:58am · Epidiolex in Epilepsy & Seizures

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!

Sun, Jan 27 7:11pm · Epidiolex in Epilepsy & Seizures

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

Sun, Jan 27 6:11am · Epidiolex in Epilepsy & Seizures

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.