Hello all,
I am new here to this website but in need of some help. My son is 32 years old, autistic and has had seizures since he was 19. We went through much trial and error before his neurologist was able to get him on a trio of meds, zonisimide, gabapentin and lamotrigine er, that has helped tremendously with him having a breakthrough gran mal about every 2 years but he has alot of focal seizures lasting less then a minute total. He doesn't loose consciousness with these but we had an ambulatory eeg done that showed he has almost constant seizure activity in his brain. He has only had 1 other ambulatory eeg done before and that was 12 or 13 years ago when his seizures first started. He has been having the small focal seizures for a long time. Neurologist told me these were breakthrough seizures and is really pushing vagus nerve stimulator therapy. His dad and I have been doing alotvof research and dont think this is best for him. The possible side effects are very scary and due to Eli having autism he has a very limited understanding of things. He never knows when he is going to have a seizure so him havingva magnet to scan the vagus nerve implant isnt going to be helpful. He would still need to be on meds and there are no guarantees this will even help him. As his mother i suffer from a damaged vagus nerve that occurred during surgery and I have chronic gastroparesis. We are afraid of the vns. I got a little upset with his neurologist because they ask me how did I plan to control his seizure activity if we don't do the vns. I told her, as his doctor I thought they were supposed to come up with another plan, not us. I am so frustrated and worried for him. Any comments or help is greatly appreciated.
Worried mom here!
Sharon