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New! 3yr old son with complex partial!
Mon, 09/18/2006 - 12:29Topic: Parents & Caregivers
My story as I look back is frightening. My son had a seizure about three and a half weeks ago and it lasted 45 minutes long! It took them three doses of heavy meds to get it to stop. He has now been diagnosed as having Complex partail seizures. He has been on dilantin and now they are starting him on Trileptal. This is all so new to me. I am so afraid to let his sleep in his bed which is upstairs and not be there to help him. He has had two others that we know of so far, one at night and the othe in the morning. It is so hard to know when or if he is having a seizure! Can anyone offer any similarities? and or experiences?
Thanks so much!
Comments
Re: New! 3yr old son with complex partial!
Submitted by cheryl doran on Thu, 2006-09-21 - 19:22
Hi, so sorry to hear about your son. I can't imagine witnessing your own son szing. for 45 mins. I've never experienced that and hope I never will. My son is 10 and was diagnosed 3 1/2 yrs. ago. We went 2 yrs. without szs. and then just a few here and there until this past spring. They found a brain malformation(cortical dysplasia) that wasn't picked up on the original M.R.I. The good news is he is a candidate for surgery. We don't have a date set yet. How old is your son? Does he have warnings or an aura? My son has the same type of sz. and is usually able to sit or put a foot down if he's on a bike, to insure his safety. At first I was so nervous because it was so new, but I'm pretty comfortable with anything he does because of the warning. What exactly does your son do when he szs? Can he tell you when he szs? Defintely see an epileptologist if possible since that is their area of speciality. Has your son had a M.R.I.?
Good luck and know there are many out there who understand. It is not always an easy road.
blessings,
Cheryl
Re: Re: New! 3yr old son with complex partial!
Submitted by dallia3 on Fri, 2006-09-22 - 13:56
Thank you for your comments.
During the first seizure, he went limp, totally lathargic, almost like an unconcious state but with his eyes open. He would not look at me but his eyes were moving around. He would not talk either. When I was on the way the the ER with him his body went stiff in his car seat, whit his arms just hanging and was staring up at the roof of the van and was chewing like he really had something in his mouth. When I got to the ER he was completly out of it. It was completly frightening, I had no idea at home what was happening with him.
He has had three small ones since that we know of. On the first one he was rubbing his fingertips together and his eyes were staring and he would not responde to my voice. His lips and eyelids were doing a small twitch as well.
Another one happened during the night. He woke up with a wet bed and cuts in his mouth. He was also super difficult to wake.
The most recent, he came into bed with me and wanted me to hold him. He kept insisting that I hold him and that pretty much woke me up enouph to realize what was going on. Then he smacked his lips and went totally limp. He again would not respond to my talking to him. With this one I sure wonder if he felt something that it was going to happen because he was so insistant that I wake up and hold him.
As you can see, there are super diffacult to detect and I am hoping that I have not missed others that he has had.
He is three and so I am on here talking to others trying to find out what he is going through emotionally and physically so that I can be and understanding parent.
Thanks again for your comments,
Suzanne
Re: Re: New! 3yr old son with complex partial!
Submitted by dallia3 on Tue, 2006-09-19 - 12:13
I am in Utah. I have not heard of an alarm. I would like more info please! Thank you, Suzanne