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Hi,
I am new to the world of epilepsy and seizures and was hoping for a little advice on night time seizures. My 11 year old daughter had her first GTC seizure in november. It happened shortly after she fell asleep and thankfully her sister shares a room with her and saw her shaking and ran to get me. After an MRI we learned she has a small Grey Matter Heterotopia in her parietal lobe that is causing sharp wave discharges on EEG that led to her seizure. She has not been put on daily medication - the neurologist said we should wait and see if it happens again. Well- it happened again last night and it was really scary because she was sleeping again and says she remembers waking up feeling like she was suffocating and that something was blocking her throat and she couldn't breath. Luckily her sister saw her again and ran to get me. I found her seizing face down in her pillow and I'm just so thankful her sister saw her because it lasted about 4 minutes and I am freaking out that she would have suffocated if I hadn't got to her to roll her on her side. I was wondering if anyone has experience with this and as a parent how do you sleep at night and not worry yourself sick? I did find a special pillow made in europe that is for people with epilepsy not to suffocate at night- but it's $200. I will gladly get it if could save her life- but i'm not sure if there are other options or something better. I also got her a smart watch that she wears at night and is supposed to call my phone if she has a seizure - but unfortunately it didn't alert me last night- so what little piece of mind i had from it is gone.
Thanks for your help.
I am new to the world of epilepsy and seizures and was hoping for a little advice on night time seizures. My 11 year old daughter had her first GTC seizure in november. It happened shortly after she fell asleep and thankfully her sister shares a room with her and saw her shaking and ran to get me. After an MRI we learned she has a small Grey Matter Heterotopia in her parietal lobe that is causing sharp wave discharges on EEG that led to her seizure. She has not been put on daily medication - the neurologist said we should wait and see if it happens again. Well- it happened again last night and it was really scary because she was sleeping again and says she remembers waking up feeling like she was suffocating and that something was blocking her throat and she couldn't breath. Luckily her sister saw her again and ran to get me. I found her seizing face down in her pillow and I'm just so thankful her sister saw her because it lasted about 4 minutes and I am freaking out that she would have suffocated if I hadn't got to her to roll her on her side. I was wondering if anyone has experience with this and as a parent how do you sleep at night and not worry yourself sick? I did find a special pillow made in europe that is for people with epilepsy not to suffocate at night- but it's $200. I will gladly get it if could save her life- but i'm not sure if there are other options or something better. I also got her a smart watch that she wears at night and is supposed to call my phone if she has a seizure - but unfortunately it didn't alert me last night- so what little piece of mind i had from it is gone.
Thanks for your help.