I've talked to most of you before, and my son is doing better on the medicine. Thanks for all the information. Now the big thing in our house is how to feel comfortable with our 3-year old son sleeping in a different room. What if he has a seizure and is sleeping on his stomach. Will he suffocate himself to death???? Is this just an unheard of fear that I've made up?? He sleeps right across from our room and now is little brother sleeps with him. Will I hear him if he has a seizure in his sleep? He has never had one before but what if he does?

hey there,

i too have epilepsy. my parents had the exact same concern as you and when i was a kid (age 6-10ish) i had to sleep on the floor in my parents room for exactly the same reasons you mentioned in your post above. my mother was scared that a seizure would come during the night and i would die.

sure my parents got to sleep with the comfort that i was on the floor beside them. i had seizures during the night and i was never in any danger.

the problem was: i grew up sleeping in my parents room. when i finally got to return to my bedroom i couldn't sleep. i was dependent upon my parents breathing to get to sleep. if i couldn't hear them sleeping i would not sleep. it took me years to get over this and i'm presently 18 and i wake up some nights and can't get back to sleep unless i hear my parents.

i would just be careful that's all. don't let your child become dependent upon you but if it calms your worries than maybe it's the best thing.

I also wondered if you can suffocate during a seizure if your face is in the pillow.

I'm new at these message boards but seeing all these people post about the same disorder i have, makes me feel as if I'm at home.

I too have Epilepsy. Grand-mal seizures in fact, which are the worst type to have. The weird part about my condition is I will only have a seizure at night, in my sleep. I have never once remembered anything of what had happened the previous night whenever I would wake up in the hospital at 3am. It was scary at first but soon became a routine. I am now taking Tegretol to control my seizures.

My parents were worried also about me sleeping alone at night in a bed and then having a seizure. For awhile I had my sister sleep with me, but finally my parents consulted the doctor about it. The doctor advised us that it is very unlikely for me to suffocate myself while having a seizure. You begin to shake convulsively, not smother yourself in a pillow. Also, all those stories about swallowing your tongue also created a paranoia within my parents. The doctor had spoke of how the best thing to do when I do have a seizure is to just sit there and make sure i do not injure myself. Swallowing my tongue is really impossible to do. Now, biting your tongue is possible. On many occasions I have bitten a portion of my tongue off and awake with a pool of blood on my bed sheets. Thats sort of scary I guess. Also, with my seizures, I go into a phase of amnesia about an hour before the actual seizure and an hour after. will respond to everything and walk around like nothing was wrong...until the seizure struck. Once I had gotten out of my bed and was walkign around my room, but once the seizure began I fell, hitting my hed on the wall and breaking ym nose. there is still a blood stain on my carpet. A few other occasions my parents have found me lying about somewhere inthe house with the dog barking to warn them that something was wrong.
I guess the one thing I really want to say is that although many things may happen to your child while he has a seizure in his sleep, it may just be best if you leave him in his bedroom at night. Being in a different area than he is normally used to may cause a more hazordous situation. He may go into a stage of amnesia as I do and be walkig around thinking there is a door where there is not. Being in his own bedroom is really the best thing you can do right now. Also, I advise you to speak with a neurologist and see what he suggests. my doctor has helped me in so many ways. Another thing, when/if your son does have a seizure, think of various things that went on throughout the day that may have led to the seizure. i get severe migraines. It may warn you of an oncomming seizure in which case you can then take him to your room for JUST that night.
I wish you luck with your dilemma.
God Bless

The Depakote and Topamax he is currently on usually helps until he gets sick. My husband and I have noticed that before when he had the grand-mal seizures he was sick and on an antibotic. Even a sinus infection affects his medicine. Does this happen to anyone else? His moods are very differnt. Thanks for all the support.

Hi there

I have a 3 yo son with a rare epilepsy in response to your first question I have been assured by the doctors here in the uk that my child is unlikely to be halmed by a small siezure the main risk is aspixiation due to vomiting although this mainly occurs when a child has status episode like my son has. I find that the only way i can have piece of mind is to have him in my room where i can hear him. I was laughing at one of the responses about a child getting used to parents breathing because my husband and I were just discussing that recently. I am lucky that way because if there ever came a time that i would dare to move him out of my bedroom then he has an older brother he could listen to him breathe. I am pregnant right now and I think that this one will be in its own room well before kevin is!!

Onyour second question about illness it often does preemt a siezure in Kevin we have found that when he is ill regular paracetamol reduce the numbers of siezures he has. Not meaning to step on anyones toes but i have just started a group for parents of children with epilepsy although it is just new there are a lot of nice parents in your situation that may be able to help If you are intrested please post back and i will send you a link

Hugs to you all
Tracey

Yes, I am very interested with anyone who could help. Thanks ao much for everyone's response. It help's ease things.

Hi there here is the link to the group http://clubs.yahoo.com/clubs.pkweuk

It is a yahoo club so if you dont already have an id you will have to get a password i think but please come along and i will direct you to other good support links as you can see i visit quite a few.

Please don't be put off at the fact that it is uk based that does mean we are ll from the uk. There are peolpe from canada and usa scotland etc on there.

Tske Care

Hope things are good for you right now

Tracey