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sleep and epilepsy
Sun, 03/27/2011 - 23:13Comments
Re: sleep and epilepsy
Submitted by oroepke on Wed, 2011-07-13 - 19:20
This is my first comment on this forum. My son is almost 11 years old and has had seizures for 2 years now. He has all kinds, absence, complex partial, grand mal....about 10-20 grand mal seizures per month on average. He once had a grand mal seizure at night and bumped his head badly, now we let him sleep on a matress on the floor, in a room right next to our bedroom.
I will be back soon to share more experiences, but in summary we had multiple EEG's (ST and long term), we live in Austin and have taken him also to Houston and New York to get additional opinions. He has been on Lamictal, Zonegran, Zarontin, Keppra, Trileptal and is now on Depakote and steroids (Solu-medrol and prednisone). Nothing has helped, sometimes (rarely) he is seizure free for a week but usually he has multiple seizures weekly.
We watch him every second. We have a pool at home and he had a total of 4 grand-mal seizures in the pool and would have drowned even in knee deep water had we not been there. We have baby-monitors in all rooms, so that we can get some "down-time" once he sleeps. His seizures totally dictate our life.
O.
This is my first comment on this forum. My son is almost 11 years old and has had seizures for 2 years now. He has all kinds, absence, complex partial, grand mal....about 10-20 grand mal seizures per month on average. He once had a grand mal seizure at night and bumped his head badly, now we let him sleep on a matress on the floor, in a room right next to our bedroom.
I will be back soon to share more experiences, but in summary we had multiple EEG's (ST and long term), we live in Austin and have taken him also to Houston and New York to get additional opinions. He has been on Lamictal, Zonegran, Zarontin, Keppra, Trileptal and is now on Depakote and steroids (Solu-medrol and prednisone). Nothing has helped, sometimes (rarely) he is seizure free for a week but usually he has multiple seizures weekly.
We watch him every second. We have a pool at home and he had a total of 4 grand-mal seizures in the pool and would have drowned even in knee deep water had we not been there. We have baby-monitors in all rooms, so that we can get some "down-time" once he sleeps. His seizures totally dictate our life.
O.
Re: sleep and epilepsy
Submitted by jbmom on Fri, 2011-06-17 - 23:26
Hi and welcome to the club, everyday since his 1st seizure 6 yrs ago I have been on high alert constantly watching him and jumping everytime the phone rings when I am not with him. I really feel seizures are one area of medicine that they do not know enough about and educate the patients and families on poorly. I am terrified every time he has one, despite him having had about 75 in the last 18 months. You can contact me any time you want to talk for a truely sympathetic ear..and I wish you and your family the best of luck in getting answers and the best care for your son. jbmom