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Sat, Apr 25 7:44am · Anyone had a brain stimulator placed for epilepsy? in Epilepsy & Seizures

Yes, I have heard/read mixed reviews about the VNS. I should have been more specific… has anyone had a neuropace RNS placed? From what our neurologist said it hasnt been placed on too many kids because I think it’s a some what new procedure. This is implanted in your brain and much more invasive which is why I’m hesitant. Any feedback would be great!

Tue, Apr 21 8:21pm · Anyone had a brain stimulator placed for epilepsy? in Epilepsy & Seizures

Has anyone had a brain stimulator placed? Our neurologist said that it’s a fight with insurance to get approved for children (I have a 7 yr old with Epilepsy). Just want to learn more about it and hear from people who have had them placed. My daughter has been through 2 brain surgeries so I don’t think I’m mentally there to go through all this again. I’m also not sure if it’s the best solution for her. Would love to hear any feedback….thanks!

Tue, Apr 21 8:11pm · Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)? in Epilepsy & Seizures

My daughter (7) takes the oxtellar which is the extended release. I found that she has less highs and lows w the extended compared to when she took trileptal 2x’s a day.

Tue, Apr 21 8:07pm · Epidiolex in Epilepsy & Seizures

My daughter was on it and I noticed she would get dry heaving from it. We would give a heavier dose at night because that’s when she has her seizures. But if she woke she would be dry heaving. She was only 6 when she took it but compared to the other stuff she’s on i didn’t see much more of a change/side effects. She isn’t on it anymore because unfortunately it didn’t control her seizures. Best of luck!

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 · Trying to get my daughter with a seizure disorder on 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!