Angie Lalanne
03-23-2006, 02:47 PM
Has anyone heard of anything like this before?
My 3 year old son rolls his eyes as he is falling asleep in the car. They kind of flip up into their sockets and then after a minute or two he falls asleep. It only happens if he is tired. He is able to respond whilst this is happening and if I draw his attention to something it stops. We have been told it is partial benign childhood epilepsy and he has been put on 600mg of Epilim per day which has made no difference at all.
Has anyone ever seen epilepsy which ressemble this?? My instinct tells me the diagnosis is wrong and I want him off the meds.
Thanks, Angie
My 3 year old son rolls his eyes as he is falling asleep in the car. They kind of flip up into their sockets and then after a minute or two he falls asleep. It only happens if he is tired. He is able to respond whilst this is happening and if I draw his attention to something it stops. We have been told it is partial benign childhood epilepsy and he has been put on 600mg of Epilim per day which has made no difference at all.
Has anyone ever seen epilepsy which ressemble this?? My instinct tells me the diagnosis is wrong and I want him off the meds.
Thanks, Angie
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ilovegod
03-23-2006, 03:49 PM
Is he twitching at all? I've heard about rolling eyes with child grand mal seizures. I had that but I grew out of grand mal seizures around age 8ish.
You should seek for a second medical opinion. It never hurts to have get another doctors advice!
It doesn't like sound epilepsy in the fact that he can respond to you. He sounds like his dosage of medication is very high for his age.
Good luck and I hope it works!
Kat
You should seek for a second medical opinion. It never hurts to have get another doctors advice!
It doesn't like sound epilepsy in the fact that he can respond to you. He sounds like his dosage of medication is very high for his age.
Good luck and I hope it works!
Kat
heather06
04-02-2006, 12:33 AM
Has anyone heard of anything like this before?
My 3 year old son rolls his eyes as he is falling asleep in the car. They kind of flip up into their sockets and then after a minute or two he falls asleep. It only happens if he is tired. He is able to respond whilst this is happening and if I draw his attention to something it stops. We have been told it is partial benign childhood epilepsy and he has been put on 600mg of Epilim per day which has made no difference at all.
Has anyone ever seen epilepsy which ressemble this?? My instinct tells me the diagnosis is wrong and I want him off the meds.
Thanks, Angie
--------------------------------------------------------------------------
hi--
my name is Heather, and I'm only 19. Since I was your sons age, I had the same problem and it took years and years for my doctors to listen to my parents and put me on ANY medicine or try anything. They told my parents i would grow out of it, So i would be thankful that in the last 20 years things have advanced. This sounds very famililar. I only jerked like that as I was falling asleep as I was falling asleep in a car, but its not the sleep aspect, its the sunlight, and it actually is a type of epilepsy, and the good news is, it can be treated, if done so in the right way. I was put on Lamictal (WAY wrong for me too) and nothing changed. still rode in the car. still jumped as i fell asleep passing threw sun spots in the road. Then they put me on depakote, which made me gain a lot of weight (never ever let them put your son on that one, i know 20+ people who have gained weight and never lost weight on that one, and there are other options that are available if you can help it) and then i tried zonegran which helped WONDERS for this problem, but the thing is i dont think someone his size can take it, i think its for people my age now, but now i take zonegran and keppra together, and havent had problems in a very long time. but ive never ever had a seizure any other time except in the car like your explaining. My neurologist told me that only 1-2% of people with epilepsy have that kind, and its called Photosensitive Epilepsy. They may have misdiagnosed your son, Check into it!, best of lucK.
- Heather
My 3 year old son rolls his eyes as he is falling asleep in the car. They kind of flip up into their sockets and then after a minute or two he falls asleep. It only happens if he is tired. He is able to respond whilst this is happening and if I draw his attention to something it stops. We have been told it is partial benign childhood epilepsy and he has been put on 600mg of Epilim per day which has made no difference at all.
Has anyone ever seen epilepsy which ressemble this?? My instinct tells me the diagnosis is wrong and I want him off the meds.
Thanks, Angie
--------------------------------------------------------------------------
hi--
my name is Heather, and I'm only 19. Since I was your sons age, I had the same problem and it took years and years for my doctors to listen to my parents and put me on ANY medicine or try anything. They told my parents i would grow out of it, So i would be thankful that in the last 20 years things have advanced. This sounds very famililar. I only jerked like that as I was falling asleep as I was falling asleep in a car, but its not the sleep aspect, its the sunlight, and it actually is a type of epilepsy, and the good news is, it can be treated, if done so in the right way. I was put on Lamictal (WAY wrong for me too) and nothing changed. still rode in the car. still jumped as i fell asleep passing threw sun spots in the road. Then they put me on depakote, which made me gain a lot of weight (never ever let them put your son on that one, i know 20+ people who have gained weight and never lost weight on that one, and there are other options that are available if you can help it) and then i tried zonegran which helped WONDERS for this problem, but the thing is i dont think someone his size can take it, i think its for people my age now, but now i take zonegran and keppra together, and havent had problems in a very long time. but ive never ever had a seizure any other time except in the car like your explaining. My neurologist told me that only 1-2% of people with epilepsy have that kind, and its called Photosensitive Epilepsy. They may have misdiagnosed your son, Check into it!, best of lucK.
- Heather
neurowreck
04-02-2006, 02:52 PM
Since he's responding to you if you talk to him, and it only happens when he's falling asleep, it sounds like he's just going to sleep....I've seen adults who do the same thing, and they don't have seizures- they're just tired. I've also seen adults who sleep with their eyes part way open.....I'd want a second opinion.... it's the fact that he's responding to you that makes me question the seizures.....but talk to another doc- has he had EEGs with specific results that look like the syndrome of seizures they're talking about? I'd have lots of questions on that one too...
Travis from MN
04-02-2006, 03:40 PM
My friend from the metro, his seizures only strike when he is falling asleep. He will also have them it seems when changing sleep cycles during the night at times. Usually it is when it is first dozing off that a will strike, or a series of seizures. He will awaken between them and be fully aware of his surroundings. before trying to go back to sleep or go back to what he was doing.
He still needs to be on a good dose of medications. Why he does not have seizures during the day or while awake I cannot say.
That is the only similar case I can relate to you so you know you are not alone in this. He is NOT photo-epileptic. He does not have other triggers I know of (we worked concerts in the metro).
--Travis
He still needs to be on a good dose of medications. Why he does not have seizures during the day or while awake I cannot say.
That is the only similar case I can relate to you so you know you are not alone in this. He is NOT photo-epileptic. He does not have other triggers I know of (we worked concerts in the metro).
--Travis
niecsey
04-03-2006, 07:36 AM
I agree if its when ehs about to fall asleep then it most likely is just falling asleep and trying to stay awake at the same time l do it myself force myself awake esp when watching something good on tv if your worried see your doc :)