My 12 year old son - Epilepsy Message Board

ctseverson · 03-01-2003, 09:51 PM

My 12 year old son has had "episodes" since he was 3. Please see topic "son's episodes". He was originally diagnosed with seizure disorder although no seizure activity was ever found. He was put on tegretol - didn't work. Switched to Depakote - weened off after one year with no "episodes". 5 years later he had another "episode" he was put back on Depakote and exactly one year to the day he had another one. Throughout the years the doctors have hinted that the seizure diagnosis is wrong - now they have confirmed it. We were sent home from the hospital this time with the instructions "double his Depakote, but I don't think it will do any good since I don't think these are seizures". This was from the neurologist. I have an appointment with a new nuerologist on 3/13, however what to do until then I am not sure. He is now on 1000mg of Depakote a day and this makes him so tired he can't keep his eyes open. We had to switch it to two at night- they originally wanted one in the morning and one at night but he couldn't stay awake for school. Now he is sleeping so soundly at night that he doesn't even wake up for the bathroom. He has wet the bed twice in the last week. I don't know what to do. I am angry that he is being drugged for something he probably doesn't even have instead of them digging to figure this out. If anyone can give me any advice I would greatly appreciate it. Also, I did not go into detail about his "episodes" because this is already so long - if you have any questions, I will be glad to be more specific about what happens.

Thanks for any help you can give,
Tina

[This message has been edited by ctseverson (edited 03-02-2003).]

Rebecca's Mom · 03-03-2003, 07:26 AM

Hi - what a difficult situation you are in. Making decisions just wears me out and it seems that is where you are as well. Anyway, my Rebecca is almost 18 and what I have finally figured out is to go with my gut feeling. If you feel you need another opionion, then find one. Maybe he could go to a large centre and into an Epilepsy unit where he would be monitored 24/7 to see what is really going on. How is he feeling about it all? Lucky he has you to advocate for him. At our house, we always opt for quality of life vs. medication and we tend to keep her on minimal meds because the side effects of drugs don't allow her to function. We believe she would rather have a seizure and then get up and have a good time, as opposed to being too "out of it" to enjoy the day........best to you and yours.....Paula

ctseverson · 03-04-2003, 10:37 PM

Thank you. He has been in an in-patient setting where he was monitored 24/7 for days at a time - they found nothing. We will be going for our second opinion on 3/13. Hopefully this doc will be able to figure this out. If not, I have spoken with a doc at MNCEP who said if this doesn't work out, to give him a call and he will give me a name and number. The problem with minimizing the meds before we figure out what this is, is he stops breathing with these "episodes" so it could be a matter of life and death.

Thank you for all your good thoughts - my prayers are with you,
Tina