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Nighttime Seizure Monitor

Mon, 08/14/2017 - 18:08
I haven't posted here in years. This place was a lifeline to me when my daughter was first diagnosed. Looking for advice on nocturnal seizure monitors. We previously used the Emfit and AV camera. It had a fair number of false alarms - BUT, I had the camera, so I could wake up and see if she was ok - then fall right back to sleep. Now she is older and deserves some privacy. Was thinking about the Embrace monitor and an audio monitor. Any experience with the Embrace monitor? Any other ones you like? She had absence, complex partial and GTC. Her complex partial and GTCs typically presented during sleep and sleep-wake transitions. Background: My 12 year old has been seizure-free for 5 years. We are ready to try a medication wean. She has partly failed in the past - the first attempt we tried was at the 2 year mark - no seizures but she had some discharges on her EEG (BUT we were able to come down on her dosing on one of her two meds). We subsequently weaned down to one med a couple years later. She has had normal EEG on one med for the past year. Her neurologist wants to trial coming off completely. I am a nervous wreck.

Comments

Hey, I don't know why no one

Submitted by TJP1214 on Mon, 2017-10-16 - 18:07
Hey, I don't know why no one has replied to this post yet but I have been using the embrace monitor since they shipped it to me last year.  It came at the perfect time because my son was switching meds after going toxic on Trileptal and was having breakthroughs during the titration period.  The embrace detected 2 tonic clonic seizures during naps that I would never have known about.  However, it missed one T/C seizure that I heard through the sound monitor during sleep one day.  So its not perfect, but definitely provides some peace of mind.  Best of luck to you and your daughter. Feel free to email me if you want to talk further.  sugarmyst@gmail.com 

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