need advice

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catherinehamilton

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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.
 
Hi catherine, welcome to CWE!

Definitely call the neuro to let him know of your concerns and ask for what next steps to take to keep your daughter safe. Don't hesitate to push for an appointment this week to discuss medication options.

You could try a Sleep Activity Monitor like this one: (http://www.samialert.com/purchase/). Expensive but I think there's an organization that will provide financial assistance if need be. There are other monitors mentioned in this thread: http://www.coping-with-epilepsy.com/forums/f42/advice-re-sleep-breathing-monitors-pls-10490/

There are some pillows available from amazon that might help, though there's not a lot of info out there as to how well they work:
[ame="http://www.amazon.com/ObusForme-Homedics-OFPL-CMB-Ortho-Pedic-Contoured/dp/B002OHE46S/ref=pd_sbs_hpc_1"]Amazon.com: ObusForme by Homedics OFPL-CMB Contoured Pillow with Memory Foam: Health & Personal Care@@AMEPARAM@@http://ecx.images-amazon.com/images/I/31EHekPDqrL.@@AMEPARAM@@31EHekPDqrL[/ame]
[ame="http://www.amazon.com/Sleep-Joy-ViscoFresh-Advanced-Contour/dp/B004PB7OTA/ref=pd_sim_hg_1?ie=UTF8&refRID=0J34XZKHFGNKP2SS5V8G"]Amazon.com - Sleep Joy ViscoFresh Memory Foam Advanced Contour Pillow - Specialty Medical Pillows@@AMEPARAM@@http://ecx.images-amazon.com/images/I/41b%2BdNrJfTL.@@AMEPARAM@@41b%2BdNrJfTL[/ame]
 
Thank you so much. That is very helpful. I ordered the safe sleep pillow from the UK and the nurse at the neurologist office also suggested a baby monitor.
 
The Tempurpedic mattress people also make a great contour memory foam pillow. That's what I use (I have nocturnal seizures too). You just have to make sure that sleeping on her side becomes a habit. Having a pillow like that helps in that it keeps the neck lined up right and keeps you from rolling onto your front.
 
The baby monitor is a very good idea. I am not a parent, but I have epilepsy - both nocturnal and day time. My husband uses a bay monitor for me. When I start to get that "feeling", I go lay down b/c I know a seizure will happen soon. My husband puts on the baby monitor (no, we don't have a baby, the monitor is for me) while he is in his office. I also wear a protective helmet on occasion. Like if I need to get up to use the restroom, but am having seizures/auras, I put the helmet on. The baby monitor is a great help. My husband listens for me and comes right away. Even my 12 yr old helps to take care of me! :)
 
Correction, I'm not a parent of someone w/ epilepsy - I am a parent!
 
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