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Posts (26)

Jun 25, 2019 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Yes, she is at max dose. Haven’t seen any improvements with the epidiolex. We increased her Trileptal and since we have done that she has been going 2-3 weeks with no seizures. We have neuro appt in July so will discuss possibly increasing epidiolex or getting her off. Some studies showed that we could increase more by based obviously on side effects etc. she is also on Vimpat which makes her crabby in the morning after she takes it which effects school and the desire to learn. Not too many options with that one since there are no extended release. She has been on vimpat and oxtellar (extended trileptal) for many years. If anyone has suggestions would love to hear them? Getting her on the extended release with the Trileptal was a big difference in mood. Thanks for reaching out!

May 15, 2019 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

I feel your pain! My daughter has been through 2 surgeries and still has seizures. It’s just very frustrating but did see a big difference in quality of life after surgeries despite physical set backs. It was a hard decision but glad we did it while she was young. Good luck and I’m here if you need to vent! I hate seizures! So unpredictable!

May 15, 2019 · Living with epilepsy - Introduce yourself & meet others in Epilepsy & Seizures

Yes, my daughter has been on epidiolex for about 4 months. Haven’t had too much success with it though. We may increase a little more. But…when she did go on it there was a program where we would only pay $25 until out of pocket deductible was met which we met pretty quickly because my daughter has lots of therapy. Maybe he will qualify for that? It was through insurance Caremark Cvs.

Mar 29, 2019 · Epidiolex in Epilepsy & Seizures

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!

Mar 28, 2019 · Epidiolex in Epilepsy & Seizures

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?

Feb 26, 2019 · 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?

Feb 25, 2019 · 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!

Feb 19, 2019 · 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!