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Community Manager
ModChristine
Posts: 1,502
Registered: ‎05-24-2013

Epilepsy

Unfortunately we are adding this diagnosis to my daughters list. Does anyone have a child with Epilepsy? I would love to ask your advice on a few things...
~ Christine ~
Mom to a sweet little girl and 2 busy boys
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New Contributor
keri_buck
Posts: 2
Registered: ‎04-09-2014

Re: Epilepsy

My child was diagnosed with complex partial seizure disorder. He started having seizures at 7 months old (he's 21 months now). What advice do you need?
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Community Manager
ModChristine
Posts: 1,502
Registered: ‎05-24-2013

Re: Epilepsy

Thanks @keri_buck, I think my biggest issue now is sleep..for myself.  I'm terrified that E will have a seizure while she's asleep and I won't know. I have a video monitor and keep it turned up really high and the screen on all night but as you know, seizures don't necessarily make noise.  My daughter's first Grand Mal was last month and it happened in bed and did not stop until after an ambulance ride to the hospital for IV meds.  So, it lasted an hour and I shutter to think what would have happened had I not found her when I did.  I've heard of the seizure alarms that go under the sheet but also heard that there are many false alarms.

~ Christine ~
Mom to a sweet little girl and 2 busy boys
Daisypath Happy Birthday tickers
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New Contributor
keri_buck
Posts: 2
Registered: ‎04-09-2014

Re: Epilepsy

Yes the angel care monitor. While it was great for when my son was younger, if your child moves a lot in their sleep, you'll get false alarms when they roll off the sensor pad. Unfortunately most sensors are for apnea (where they stop breathing) as opposed to rapid shaking seizures.
Posted from Android 4.2
Community Manager
ModChristine
Posts: 1,502
Registered: ‎05-24-2013

Re: Epilepsy

Yeah E wore an apnea monitor until she was 2.5 years old. Many false alarms. They make a monitor especially for seizure detection but it's very expensive and I've also heard the false alarms can drive you crazy. Supposedly it detects repetitive movements that go on for more than a minute.
~ Christine ~
Mom to a sweet little girl and 2 busy boys
Daisypath Happy Birthday tickers
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Posted from Apple iPad
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