Sorry you’re having a tough time getting answers. Don’t give up! My son had epilepsy. We spent months completely frustrated with doctors who didn’t know what to do, other than try different medications. It was hell!!! We finally found a friend of a friend who’s sons went through a very similar situation and found help at the Mayo Clinic in Rochester MN. So we contacted them. They knew what to do almost immediately. My son is now seizure free. I know your situation is different, but my point is to reach out like you’re doing here for possible solutions. Don’t accept one doctors opinion. I pray that you find the right solution.