Connect
Any drug besides depakote for generalized juvenile epilepsy?
My 22 yr old sine takes Depakote (4 yrs) for absence and grand mal seizures. He is sooo tired could sleep 16 hours per day… cannot wake up and get out of bed to start his day (or take his meds on time every 12 hrs). Also has to take antidepressants and ADHD meds trying to focus and be productive. He feels like a failure because he cannot function … I think the drug has him too doped up and is ruining his chances at a normal life. Please help!! Jake, plz let others respond first thx
Like
Helpful
HugInterested in more discussions like this? Go to the Epilepsy & Seizures Support Group.
Connect
Thank you for the info! Neurologists in US a few yrs ago got approval for medical marijuana…. I’ll ask around and see what meds now include CBD and if this helps people with both absence and grand mal…. Sons is juvenile generalized epilepsy
Many blessings and continued good health to you 💗
-
Like -
Helpful -
Hug
3 ReactionsHi @sgboster123
First, thank you very much for your blessings!!!!
A good time ago I have met a mother here in the group whose son has epilepsy (grand mals) and other issues. The son was having a pretty hard time (ending many times at the hospital) and this mother was as well, as you can imagine. I have shared with her my journey and my experience with medical cannabis, which she explored. She went to a new neurologist and he agreed to prescribe Epidiolex (approved by the FDA) to her son. Her son has been seizure free for more than 6 months now 🙂 🙂 :-). Unfortunately, as far as I know, not many doctors prescribe medical cannabis and CBD in the US. But do not rule it out, it might also work for your son!!!!
Yesterday, I took part in an online meeting with other people that have epilepsy. One of the members has said that her seizures decreased by 80% with the keto diet she started when she was 20 years old. Her mother, a nurse, asked the doctor about the keto diet when she was still a child. But the doctor was against it at that time saying that her epilepsy was not serious enough to justify the keto diet. She could have been cured from epilepsy if she had done the keto diet when she was still a child. Sad!!!!
As I say and have experienced myself, if you do not feel comfortable with what a doctor says and recommends as a treatment to you or your son/daughter, check for a second or even third opinion. I see nowadays, how important it was to do my own research on my kind of epilepsy and alternative treatments. This for sure has helped me much to continue my journey of recovery, questioning doctors and looking for other opinions until I finally found my current epileptologist whom I trust much.
@sgboster123 please continue your way with faith. Many blessings to you and your son as well. And thank you for your comments and posts.
Santosha
-
Like -
Helpful -
Hug
2 ReactionsHi @tlb101175 and @sgboster123
Just watched this short series called The Care Giver and thought of you two.
I wish you a peaceful weekend!
Santosha
-
Like -
Helpful -
Hug
1 ReactionI am intrigued by the CBD. Do you take it in pill form? I'm sure it is quite expensive. Are you aware if the Epidiolex is the only med he takes to control his seizures.
Hi @tlb101175
I take pure CBD in oil format. As far as I know, Epidiolex is also in oil format, correct? Great to know that Edpidiolex controls his seizures 🙂 🙂 :-). Really a pity that still many doctors are against medical cannabis. It should be tried on more patients. I do not have any of those pathologies that Epidiolex is recommended for and medical cannabis has been the best medication I have tried in my epilepsy journey with far fewer side-effects.
Yes, it is not a cheap medication and here in Brazil, medical insurance does not reimburse the medications prescribed by doctors as they do in the States. But I do understand that if a doctor prescribes it in the States and if it is a FDA-approved medication, insurances do need to reimburse it, don't they?
Santosha