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My wake up call- my son's 1st nocturnal seizure
Sun, 04/01/2007 - 10:33Topic: Living With Epilepsy - Youth
My six year old has been seizure free since last august. He always had tonic-clonic seizures during the day and has been on 45mg Topomax for a little over 2 years. This morning he was in my bed so I was able to witness it right away- I heard him gasping for air, I turned on the light and saw the shaking. I turned him on his side since it seemed like he was gagging on saliva and his mouth was turning blue and then the stiffening phase and then it was over. This is all what used to happen with his daytime seizures- but this was a first to have it during sleep (or at least the only one I knew about).
Does anyone have any experience with this?
I am researching right now on nocturnal seizures, but I thought a person either had noc seizures as a type of epilepsy, or didn't. I am still new to this despite him being diagnosed over two years ago. We were very lucky to have it diagnosed very early and treated with Trileptal and finally Topomax. To my knowledge he has only had maybe eight seizures including this one. Bear with me, I respect so many of you that are such a wealth of knowledge and experience!
Comments
Re: Re: My wake up call- my son's 1st nocturnal seizure
Submitted by MindyRoy on Wed, 2007-04-04 - 17:33
I am feeling your pain too.
This past week Shelbie has had a total of 28 tonic-clonic seizures. She had most of them as she was sleeping or started to fall asleep. This is not normal for her. They started last Tuesday, and she has had 2-3 and even 6 a day. I was just trying to think how many were while she was sleeping. She had 2 on 3/27, 3 on 3/28, she had 2 on 3/29 and 2 on 3/30 that while she was awake, but she had 1 on 3/30 that was while she was sleeping, 6 on 3/31 and 4/1 with all of them while she was sleeping, She had 4 on 4/2 with 1 as she was awake, 2 yesterday while sleeping, and 1 today. I am lost with this. We have spoken with the doctor a lot over the last week, because this is not normal for her. We have never had this many problems since she was dx in Aug.
She is on topamax and zarontin. She started having absence seizures in Jan, so once they started getting bad, the added zarontin. She hasn't had an absence seizure since the first of march. When she started these seizures this past week, they upped her zarontin from 250mg 2x day to 250mg in morning and 500mg in the evening. When she kept having them they decided to do 500mg 2x daily. On Friday 3/30 they decided to up her topamax to 125mg from 100mg 2x daily. As of yesterday they decided to up her topamax by 25mg every 3 days. We started yesterday with 125mg in morning and 150mg in evening. So in 3 days she will do 150mg 2x daily, and we will keep adding 25mg until she is up to 225 2x. They are hoping that will help.
I am just so tired, because I can't sleep. Her dad and I have slept right next to her since last week. We are so scard for her. She wets herself each time, so I need to be there to help her. I am going to stop by the store tonight and get some pull ups for her. This might help.
Well take care, and I hope your son does better. Thanks for letting me talk.
Mindy
Re: My wake up call- my son's 1st nocturnal seizure
Submitted by mollyandasa on Sun, 2007-04-01 - 11:08
Here's a bit more info in retrospect and after reading: my son has had a very stressful week (or past couple of weeks). His behavior has gone to the lowest common demoninator at school and yesterday we had some issues and upset. What's interesting, in the past, is that this kind of behavior always preceded a seizure. I noticed through the night he was waking often after dreaming, he was obviously dreaming of upsetting or stressful things. Is this type of unrestful sleep something that could have caused this seizure?