Is anyone taking Xcopri?

@bearbayou
Thank you for sharing more details about your son's situation. After reading this last post of yours, I had another thought I wanted to share with you.
Low sodium is a well-known seizure trigger – one that both your son and I have dealt with. So I'm wondering if the LMNT and homemade rehydration solution you've been giving him might be another piece of his improvement puzzle. The increase in his sodium levels might have also contributed to fewer seizures, which in turn could be helping his cognitive improvement and vocabulary.
Have you perhaps noticed fewer seizures since you started giving him the LMNT and homemade rehydration solutions?
I wanted to share this thought while it's fresh in my mind. I'll respond more fully to your post on Monday!
Have a lovely Sunday!
Chris

Hi Chris
My son had emergency surgery in 2016 for a intraventricle central Neurocytoma of a massive tumor- had no symptoms of a headache - major complaint frequently was upset stomach with vomiting that the emergency room always dismissed as a bad virus or other digestive ailments which all proved not it was from the tumor growing in his brain- he’s since had 9 brain surgeries one of which they inserted a VP PRO GAV SHUNT - result of these he remained with many disabilities and seizures- he’s tried multiple seizure meds thru the years to finally after 2023 having his last surgery of an anterior temporal lobectomy and taking xcopri along with onfi he has been free of experiencing his constant outward seizures , but he is suffering on a daily basis inward seizures like electrical painful sensations in his brain that neurologists can’t seem to alleviate - he tried migraine meds , Botox and injections to no avail and stopped - he continues with his daily therapies and keeps a positive outlook it’s our hope they will find a relief for him to have a quality life

@jemollica Good morning!
I'm so sorry for everything you and your son have been through over the years.
I'm glad to hear he's no longer having the outward tonic-clonic seizures. I'm wondering if these "inward seizures" you mentioned are focal seizures? Even though they're internal, they can be very painful. Most of my seizures are focal ones, and some can be quite intense. After my J&J COVID shot, I had continuous focal seizures for 10 days and was completely exhausted. So I have some understanding of the pain he's experiencing 😓.
Does your son stay aware during these seizures, or is his awareness impacted? How many of these inward seizures is he having on average each day? Did his doctors explain what type of seizure these are?
Sending you and your son much strength! Crossing my fingers that his doctors will soon find a way to reduce these inward seizures 🙏🙌.
Chris

@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

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

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…

@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

@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