Is anyone taking Xcopri?

@jemollica
I wish you and your son the best. It's terrible and extremely frustrating when you don't have answers. If you ever want to talk or need more information on Epidiolex, always feel free to reach out.
Kerry

@keeg1010
Hi Kerry
Thank you so much for jumping in to share your son's experience on Epidiolex with @jemollica — really appreciate you taking the time! 💜
Chris

@keeg1010
thank you for the information which I will discuss with. My son’s neurologist
I describe his painful electrical seizure like sensations as internal as there’s no outward jerking And shaking like he would have when he was getting his outward seizures
At most he will experience a flutter of his fingers and occasionally a tightening to his chest and then difficulty in talking
His sensations will mostly be the entire head and sometimes isolate to just an area left , right or crown
Since his anterior temporal lobectomy he has not had an outburst of external shaking , jerking seizures in about 2 years which were focal seizures

@jemollica
I am so sorry to hear what your son and you have been going through. My son, Keegan, developed treatment resistant epilepsy when he became an adult. He has tonic/clonic seizures that completely wipe him out for an entire day. I'm still a bit confused about what you mean about "internal" seizures. You said they are like sensations, like electrical painful sensations. Do they occur every day? Have you been able to find a trigger for these seizures or are they just random throughout the day? I am not very familiar with internal seizures. However, I am very familiar with Epidiolex and the benefit it has for my son. Keegan has autism, cerebral palsy, and adult-onset epilepsy. When Keegan was diagnosed with epilepsy, we tried several AED's but the side effects were so debilitating that he ended up spending a week in the hospital due to the combination of meds. We were lucky enough to get in to Mayo clinic and it was the best thing that could have happened. Keegan takes lamotrigine and Epidiolex, which is pure CBD compounded through a specialty pharmacy. The Epidiolex has been amazing. Keegan went 2 years without seizures once we started Epidiolex. It made a HUGE difference in his quality of life. He also has no harsh side effects. I don't know if this will be helpful for your son but if you would like to know me, feel free to reach out. I'd be happy to answer any questions. I'm glad you found this group. I've said it before and I'll say it again-this group is wonderful and everyone here is extremely supportive and willing to help any way they can. I was EXTREMELY blessed to find this group and have made some wonderful friends. Lean on your family and this support group.
Kerry

@jemollica
I am so sorry to hear what your son and you have been going through. My son, Keegan, developed treatment resistant epilepsy when he became an adult. He has tonic/clonic seizures that completely wipe him out for an entire day. I'm still a bit confused about what you mean about "internal" seizures. You said they are like sensations, like electrical painful sensations. Do they occur every day? Have you been able to find a trigger for these seizures or are they just random throughout the day? I am not very familiar with internal seizures. However, I am very familiar with Epidiolex and the benefit it has for my son. Keegan has autism, cerebral palsy, and adult-onset epilepsy. When Keegan was diagnosed with epilepsy, we tried several AED's but the side effects were so debilitating that he ended up spending a week in the hospital due to the combination of meds. We were lucky enough to get in to Mayo clinic and it was the best thing that could have happened. Keegan takes lamotrigine and Epidiolex, which is pure CBD compounded through a specialty pharmacy. The Epidiolex has been amazing. Keegan went 2 years without seizures once we started Epidiolex. It made a HUGE difference in his quality of life. He also has no harsh side effects. I don't know if this will be helpful for your son but if you would like to know me, feel free to reach out. I'd be happy to answer any questions. I'm glad you found this group. I've said it before and I'll say it again-this group is wonderful and everyone here is extremely supportive and willing to help any way they can. I was EXTREMELY blessed to find this group and have made some wonderful friends. Lean on your family and this support group.
Kerry

@santosha
Thank you for your kind words
He suffers daily intermittently through out the day from his internal brain seizure like sensations
He was diagnosed with focal seizures and is fully aware of his sensations as he was when he was experiencing the outward seizures
So far no relief has been found for him and for so many others as I read
I pray research will come up with a solution for all those suffering from these episodes which deliberate their quality of life

Soy, I still fall down most every day from my lousy balance on my right leg. Seizer or falling down and hi to your head… mmm…

You're so welcome, @jemollica !
Thank you for sharing more about your son's situation—it really helps me understand what you're both going through. I'm truly sorry he's facing such a difficult time.
Has his doctors mentioned Epidiolex as a possibility? I'm tagging Kerry (@keeg1010), whose son also has treatment-resistant epilepsy and has seen excellent results since Mayo started him on Epidiolex. She may have some helpful insights to share.
Keeping both of you in my thoughts!
Chris