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jbmom

sleep and epilepsy

I wanted to know what parents do for kids who have seizures while they sleep?....my son age 7 has partial complex seizures, he has had them since he was 22 mo old, last Monday for the 1st time that we know of he had a fairly bad seizure while asleep. We are now scared to let him fall asleep on his own and to let him sleep in his own room.

Comments

Re: sleep and epilepsy

Hello,

My son is 11 and has the majority of his seizures while sleeping. They are cal nocturnal seizures, though they can happen any time of the day when sleeping.  My son also has partial complex seizures as well as Absence and Atonic seizures.  We also have him sleep in our room to make sure he is safe.  Have you told his doctor about the nocturnal seizure?

I would love to talk with you more if you would like...

Take Care

 

Re: sleep and epilepsy

Thanks for the input and support. I did tell both his neuro and his ped docs about that seizure, no real concern from the neuro about it happening in his sleep, more so from the recent spike in seizure activity in general. our ped doc was concerned about it, but did not have any ideas short of using a monitor, but since he is quiet when he seizes a monitor would not do any good. When he first started having seizures they were mostly in the evening, so it took us a long time to get him to sleep in his own room, since for a while we would let him sleep on the couch and then carry him to bed. Now it feels like we have back tracked and the scare of him having an even more serious one during the night. I am curious how having him in your room helps you detect the seizures as in my son's case we would not even hear it happening?....would love to chat more ..

Re: sleep and epilepsy

 

 My 3 year old son just started having seizurs and drop attacks 8 weeks ago. I am new to this and I wont let him sleep in his room. He sleeps with me during naps and bed time. I am having a very hard time dealing with this. I find myself crying every day and I have no one to talk to about this.  I am so scared for him. I have never seen anything more scary in my life when it comes to helping your loved one through a seizure. I know things could be worse but all I want is for my son to be healthy. If i could, i would gladly exchange my health for his. We still are doing test to figure out whats wrong.

Re: sleep and epilepsy

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

Re: sleep and epilepsy

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.