A WWYD..

My son is a recently diagnosed epileptic. The type of epilepsy he has is characterized by seizures during sleep - and both of his seizures have been early morning before waking. Before his first seizure he came into our bedroom and asked if he could climb in bed with us. We agreed.. we only got to see that seizure because he was in bed with us. It was a silent tonic clonic seizure.

After that point, we actually have had him stay with us in our room most nights - because we are afraid of him having a seizure without us there. It was because he was in our bed that we witnessed his second seizure last week.

The thing is.. this is a 9 year old boy. He really should be in his own bed. He had been before all of this started. The doctor said we should get a baby monitor - but the fact is that his first seizure was silent.. we never would have heard it. We've read about SUDEP (sudden unexplained death in epileptic patients) and it seems that there is some cause to believe it may happen during post ichtal state when a person cannot control their body. Meaning - he could have a seizure and if he lands face down he may not have the involuntary reaction necessary to right himself in a manner that would allow him to breathe. There's also a concern about aspiration during a seizure. I had to turn him on his side last week so that his saliva would run out of his mouth instead of down his throat and into his lungs.

I guess I'm curious what you would do in this situation. Obviously having our 9 year old in bed with us until he outgrows his epilepsy (in puberty) is not a perfect solution.. but it's all we can come up with for now that gives us peace of mind.

Anyone have other suggestions?

Re: A WWYD..

Could you possibly fit a bed next to your bed for him -- this way he isn't actually in bed with you but close enough that you can monitor him through the night?

Don't feel bad that he hasn't been in his own bed. I would be doing the same thing as you. A baby monitor wouldn't cut it for me either.

Re: A WWYD..

What about one of those angelcare ones that they use to monitor for SIDS in babies? I'm not sure how big they are and if it would even work in a big kid bed.

That must be very stressful for you every night.

Re: A WWYD..

I have NO idea. Just lots of sympathy for all you need to figure out.

Re: A WWYD..

Posted by PatsBrat

I have NO idea. Just lots of sympathy for all you need to figure out.

Re: A WWYD..

Well, my feeling is that he is 9 and there is a possibility that he may not have another seizure in weeks, months, even years (I think you said you are trying new medicines?). How long are you going to keep him in your bed? How does he feel about it? Does he want to sleep in your bed, possibly indefinitely?

With all that said, if he were my son, I would probably sleep in his bed or keep him in mine

Re: A WWYD..

Posted by FelAndJon

Well, my feeling is that he is 9 and there is a possibility that he may not have another seizure in weeks, months, even years (I think you said you are trying new medicines?). How long are you going to keep him in your bed? How does he feel about it? Does he want to sleep in your bed, possibly indefinitely?

With all that said, if he were my son, I would probably sleep in his bed or keep him in mine

Re: A WWYD..

What about a video monitor close by him in his room so you can monitor him that way? And then maybe set up an air mattress in his room if you are feeling uneasy at anytime, you can sleep on his floor and monitor him closer?
I can't imagine that's an easy problem to find a solution to
I would also suggest searching the internet for a forum for parents of epileptic children and they might help you with someone none of us have even thought of

ETA:

I found this with a section for parents helping parents:

Epilepsy Forum

Message edited 1/3/2011 9:07:27 PM.

Re: A WWYD..

I slept on the floor next to my parents bed as a child when i had terrible night terrors - maybe you can set up a spot on an airmatreess or fold out bed

Re: A WWYD..

Posted by CathyB

What about one of those angelcare ones that they use to monitor for SIDS in babies? I'm not sure how big they are and if it would even work in a big kid bed.

That must be very stressful for you every night.

Re: A WWYD..

Posted by 4ForMe

Could you possibly fit a bed next to your bed for him -- this way he isn't actually in bed with you but close enough that you can monitor him through the night?

Don't feel bad that he hasn't been in his own bed. I would be doing the same thing as you. A baby monitor wouldn't cut it for me either.

Re: A WWYD..

I lurk on this board, Im not a parent yet, but a student I have with Dravet's syndrome uses a seizure monitor that is placed between the mattress and the sheet that senses signals of a seizure. If a seizure is detected an alarm goes off. Would something like this help?

something like this - seizure monitor

Message edited 1/4/2011 8:01:26 PM.

Re: A WWYD..

I am very uncomfortable with co sleeping, but honestly I would probably throw that out the window in your case and what you have gone through

I like the idea of the seizure monitor-would that work for what he has?

Re: A WWYD..

For the time being, I would be doing exactly the same thing. I would also speak to the neurologist about a seizure monitor and whether it would be appropriate for your situation as well as speak to other parents to find out what they do.

Best of luck.

Re: A WWYD..

I wish I had some advice but I just wanted to offer my support and some hugs

Re: A WWYD..

Not there yet, but I am against co sleeping - except in this situation. I think I would continue to keep him in our bed until HE felt uncomfortable with it and then try a mattress on the floor for him.

I am sorry you even have to think about this

Re: A WWYD..