@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