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Parents with more than one epileptic child
Tue, 07/31/2007 - 13:27Topic: Parents & Caregivers
Good Afternoon! I am hoping to get some feedback from any parents out there who are dealing with more than one child having epilepsy. I have a son who has unexplained Grand Mals in his sleep and a daughter who has Childhood Absence Epilepsy as well as Febrile Grand Mals with Status.
As the school year approaches, and they get ready to be out of my care again, (I am a former teacher; now a stay at home mom), my nerves begin to start to grind. I also have a three year old who has no history of epilepsy ....yet.
All parents have trouble catching their breath on a daily basis, but I feel like all I am ever thinking about is epilepsy. With special sleep schedules, medicines, and restrictions on acitivies, how does one get to be a normal family? We have very very little family support, so that does make it harder too I think.
Any hot tips on how others try to cope with what your family has been dealt?
Thanks!
Jean
Comments
Re: Re: Parents with more than one epileptic child
Submitted by eanj on Fri, 2007-08-10 - 22:03
There is a lot of epilepsy in our overall family history. Actually, my daughter began having Grand Mal Seizures at 18 months with fever that always result in a trip to the hosptial due to status. Her absence seizures came about around age two. She is on Ethosuxamide and is doing fairly well.
My son was a complete surprise. At age six, (almost seven years); after no seizure problems at all, he was feeling ill one day and I had him take a nap. He woke up in a violent grand mal that ended on its own. Since then he has had Grand Mals every six months or so during sleep with a viral illness. (No fever) But just this month he had two; one week apart during sleep during two different viral illness. (He is now eight years)
He has had two normal EEG's and a CT scan. He is going in for a MRI this week. At this point, we have chosen not to medicate him unless they occur during the day or become a more frequent thing. This part troubles me. I am afraid of medicating him for no reason, but I am also fearful that I am setting him up to get hurt from a GM during the day.
Nighttime is a nervous time around the house for me. Watching my daughter for fevers and worrying about my son and viral illness.
Jean
Re: Parents with more than one epileptic child
Submitted by kaitlynsmom on Fri, 2007-08-10 - 15:22
Jean, I think that what "normal" is to you will change once everything calms down. Once everything seems to stablize I think that your family will seem normal and everyone else will seem like they are doing something strange or different. I think that what Samantha said about not being too overprotective and not letting do the same activities or making the one without Epilepsy watch the two with is also very important. My daugther Kaitlyn has Epilepsy and my son is getting ready to have an EEG on the 15th to see if he is having seizures as well. So I am not experiencing this with both of them yet, but I am pretty sure that what he is doing is similar to my daugther. Do you mind if I ask you, have they done any testing or found a link between the two of the kids having it? I am searching for something to link the two but I can't find one. How old were they when they both were diagnosed? And how did you handle it? Thank you posting this topic... Emily