From our experience, each med affects each patient differently. But all seem to have side affects too.
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Thanks Jake. Part of the left frontal lobe was removed. My son was at high risk of SUDEP and didn’t respond to medication. We’re convinced if we continued care in Boston that my son would be severely affected if not worse. The doctors at Mayo were completely baffled by what the BCH doctors were doing. It was a very difficult decision to have surgery. Yes it was a gamble but we were fighting for his life. He is off medication.
Hi. My son was diagnosed with epilepsy at the age of 9. We went through an extremely difficult time at Boston Children’s Hospital. The were literally scratching their heads. Their only course of action was to keep trying different drug cocktails. His side effects were to most of the meds were horrendous. We finally found help at the Mayo Clinic in Rochester, MN. They knew right away what to do. My son had brain surgery at the age of 10. They removed a section of his brain they said was about the size of his fist. They made no guarantee that he would be seizure free, but it’s been 8 years and he’s been seizure free since the surgery and is doing well.
He is medication free also. Had a very successful brain surgery in Rochester Mayo clinic
Hi. My son at the age of 9 was also diagnosed with absence seizures. We were told that they could be managed with medication but the absence seizures slowly became full blown seizures. Around a dozen per day, mostly nocturnal. We tried several different medications but none of them stopped the seizures and had horrible side affects. The local doctors were clueless. Things got really bad. We weren’t getting any help and his seizures got worse. I could tell you some horror stories but I won’t. Trust your instincts. Don’t fall into the trap that we did at first by trusting the doctors every word. We left our care in Boston and found a miracle at the Mayo Clinic in Rochester, MN. But only after a battle with insurance. My son is now 17 and seizure free.
Don’t give up. When my son was getting treatment in Boston, the so called “specialist “ literally was scratching his head and had no clue what to do. He would only recommend trying other cocktails of meds. Things got really bad there. We had to sign a release to get him out of there but before we were able to go, a psychologist who only observed my sons behavior from outside in a hallway for an hour determined that it was psychological issues my son had and that we basically were part of the problem. It was the most insulting words I’ve ever heard. We left and went to the Mayo Clinic in Rochester, MN. It was like heaven on earth. They treated us with respect and compassion and also took care of my sons issues. He’s now been seizure free for 8 years. Epilepsy is complicated and varies but just keep going. Find the right doctor. Best of luck.
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.
First of all, you should think about getting another doctor. We found great help at the Mayo clinic in Rochester, MN. The doctors in Boston were literraly scratching their heads on unsuccessful treatments which only included medications. Also, I think most people and some doctors just dont know enough about seizures, its not that they don't care. Dont give up.