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hermsenk
@hermsenk

Posts: 3
Joined: Nov 15, 2016

seizure watch-monitors

Posted by @hermsenk, Fri, Apr 27 11:00am

Now that my son is more mobile with activities, work, school, sports, etc. I am interested in getting him one of the watches that can link to Smartphones to alert us if he has a seizure. I would like one that can tell time also so it does not draw unneccisary(sp) attention. I have researched but costs are not well advertised for the device and the app, etc. Thanks in advance!

Liked by mst3000

REPLY

Hello @hermsenk. Welcome to Connect.

Does the watch alert you if he's going to have a seizure or if he's had one?

@jamienolson

Hello @hermsenk. Welcome to Connect.

Does the watch alert you if he's going to have a seizure or if he's had one?

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i believe they alert you if the movement is consistent with seizure activity?

i have grand mals and from what ive read the watches alert people after the seizure,for parents this helps but i would need one that gives a warning before ,since i dont get any aura.

Liked by valm

hmm. I recently watched a PBS documentary on seizures and epilepsy and remember seeing the parent of the epileptic child who had had an electrode placed in the brain. The parents were wearing a watch/monitor stimulation device so when his son was about to have a seizure the parent would receive a notification and would push the stimulator and that would alert the sons brain to divert the seizure. Pretty amazing but I would assume a lot of thought goes into placing one in your child all depending on the severity of the seizures.

Liked by mst3000

@jamienolson

hmm. I recently watched a PBS documentary on seizures and epilepsy and remember seeing the parent of the epileptic child who had had an electrode placed in the brain. The parents were wearing a watch/monitor stimulation device so when his son was about to have a seizure the parent would receive a notification and would push the stimulator and that would alert the sons brain to divert the seizure. Pretty amazing but I would assume a lot of thought goes into placing one in your child all depending on the severity of the seizures.

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with the types of seizures so different ,the amount of time needed to be alerted and send a signal tothe brain might not be enough.My whole life i can be standing wide awake next second into aviolent grand mal.things happen so fast.

Hi @hermsenk I did a little poking around and found some information about watch monitors for epilepsy. Please note that I have no experience with any of these products.
Embrace by Empatica is the world's first smart watch to be cleared by FDA for people with epilepsy https://www.prnewswire.com/news-releases/embrace-by-empatica-is-the-worlds-first-smart-watch-to-be-cleared-by-fda-for-use-in-neurology-300593398.html Price $249 https://www.empatica.com/store/

The Epilepsy Foundation wrote an Update about the Smart-Watch https://www.epilepsy.com/make-difference/research-and-new-therapies/innovation/epilepsy-therapy-project/new-therapies-2 Exploring the Smart Watch website I found prices range from $199 to $350 https://smart-monitor.com/order-now-form/#

This article compares 3 different devices: Smart-Watch, SAMi and EmFit, including pricing http://www.bcepilepsy.com/blog/seizure-detecting-devices Note that the article is dated 2015, so prices and features have likely changed, but it gives you a starting point.

Liked by mst3000

@jamienolson

Hello @hermsenk. Welcome to Connect.

Does the watch alert you if he's going to have a seizure or if he's had one?

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Most will alert you when they start having a seizure, around 30 secs.

@colleenyoung

Hi @hermsenk I did a little poking around and found some information about watch monitors for epilepsy. Please note that I have no experience with any of these products.
Embrace by Empatica is the world's first smart watch to be cleared by FDA for people with epilepsy https://www.prnewswire.com/news-releases/embrace-by-empatica-is-the-worlds-first-smart-watch-to-be-cleared-by-fda-for-use-in-neurology-300593398.html Price $249 https://www.empatica.com/store/

The Epilepsy Foundation wrote an Update about the Smart-Watch https://www.epilepsy.com/make-difference/research-and-new-therapies/innovation/epilepsy-therapy-project/new-therapies-2 Exploring the Smart Watch website I found prices range from $199 to $350 https://smart-monitor.com/order-now-form/#

This article compares 3 different devices: Smart-Watch, SAMi and EmFit, including pricing http://www.bcepilepsy.com/blog/seizure-detecting-devices Note that the article is dated 2015, so prices and features have likely changed, but it gives you a starting point.

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I got my daughter a smart-monitor watch for $149 + $35 activation (which sometimes can be waved) & $30 a month

Welcome to Connect, @kerivb .
If you're comfortable sharing, can you tell us a bit more how the monitor works and helps you and your daughter?

What type of seizures does your daughter have? You said the monitor alerts you about 30 seconds into the start of the seizure. When you get the alert, what do you do? Does having the monitor give your daughter comfort knowing that someone is "there"?

@colleenyoung

Welcome to Connect, @kerivb .
If you're comfortable sharing, can you tell us a bit more how the monitor works and helps you and your daughter?

What type of seizures does your daughter have? You said the monitor alerts you about 30 seconds into the start of the seizure. When you get the alert, what do you do? Does having the monitor give your daughter comfort knowing that someone is "there"?

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My daughter has Tonic Clonic, she hasn’t had one since we got the watch but she shook her arm like she was having one and it took 30 secs to text me & 30 secs later to call me

@colleenyoung

Welcome to Connect, @kerivb .
If you're comfortable sharing, can you tell us a bit more how the monitor works and helps you and your daughter?

What type of seizures does your daughter have? You said the monitor alerts you about 30 seconds into the start of the seizure. When you get the alert, what do you do? Does having the monitor give your daughter comfort knowing that someone is "there"?

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And a lot can happen in a minute… had a grand mal and hit the casing on the stairway, needed stiches and bit my tongue really bad…and i didn’t remember anything.

@colleenyoung

Welcome to Connect, @kerivb .
If you're comfortable sharing, can you tell us a bit more how the monitor works and helps you and your daughter?

What type of seizures does your daughter have? You said the monitor alerts you about 30 seconds into the start of the seizure. When you get the alert, what do you do? Does having the monitor give your daughter comfort knowing that someone is "there"?

Jump to this post

The smart-monitor watch goes by movement. My daughter has absence, Myoclonic jerk & tonic clonic seizures. My daughter has not had a seizure since getting the watch. But we did a make shift shaking as if she was having a seizure….after 30 secs it sent a text message with location & after another 30 secs sent a phone call to my phone…. most seizure watches act the same, I know a few go by heart rate as well….this one also allows you to cancel the alarm and tells the receiver it was false alarm…bad thing is you can only have 1 person to call but like 5 ppl to text and you need your smart phone within at least 15 feet

I wonder if this would work for me if I have an aura going into an Partial Complex Seizure

Is anyone using the new epi-watch? If so, is it just a watch like a fit bit or is more equipment involved?

@mst3000

Is anyone using the new epi-watch? If so, is it just a watch like a fit bit or is more equipment involved?

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Hi, @mst3000 – I merged your post with this one called "Seizure Watch-Monitors" so you could discuss the EpiWatch, one of the digital tools for patients who experience seizures, with others discussing similar topics. Looks like the kind you are talking about is an app that tracks seizures and collects data, and also helps track medication and possible triggers.

As far as I can tell, it's only available as part of a research study at present.

Hoping that members in this discussion as well as others who have talked about epilepsy may have further information or experience related to this app or other seizure monitoring tools, like @kerivb @hermsenk @dawn_giacabazi @bonnieh218 @robertjr @ahernandez @twiceinalifetime @jakedduck1 @jktaheri @michele016.

@mst3000, what other types of tools like this have you looked into?

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