

Pebilepsy – Pebble app for seizure tracking and measurement - yatoomy
http://pebilepsy.neutun.com

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JshWright
Automatic notification would be a neat feature.

Have it text a family member when a seizure is detected so they can follow up
with a phone call in a little bit to make sure everything is ok.

As more and more 911 centers accept SMS messages, it might be cool to allow
the user to specify some threshold after which an automated text is sent to
911. The vast majority of epilepsy related seizures do not require an
ambulance, but in the event of a seizure that does not stop in a 'normal' time
frame[1], it could get help coming that much faster.

[1]
[http://en.wikipedia.org/wiki/Status_epilepticus](http://en.wikipedia.org/wiki/Status_epilepticus)

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yatoomy
We were thinking about that.

Would you see anything else of value?

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JshWright
Since the app is intended to be used while sleeping, it would be pretty easy
to include a preprogrammed address in the 911 message (perhaps with a
geolocation 'sanity check' just in case the wearer is traveling).

I think notifying a friend or family member is probably the most important
thing. They can follow up from there.

Text-to-911 is growing in availability (in the US, anyway), but it's far from
universal:

[http://transition.fcc.gov/pshs/911/Text_911_Deployments.pdf](http://transition.fcc.gov/pshs/911/Text_911_Deployments.pdf)

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yatoomy
The story below really helps this amazing point.

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cmfoster
This is a great idea. Unfortunately for me I have/had petit-mal seizures,
because of that I don't think the method by which this tracks seizures would
work for me.

I love the name, love the idea, keep it up!

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yatoomy
For the time being, grand mal will be the only one.

But we will update soon that might help! (another hardware platform wants to
contribute)

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SEJeff
I was literally thinking this would be amazing until I realized this is really
only for grand mal seizures. My father has suffered from petite mal seizures
his entire life.

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yatoomy
We are investigating other devices that may be integrated. So stay tuned. Sign
up for the beta and we can keep you updated!

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whyleyc
I've been looking for something like this for ages - I have a family member
who suffers from generalized tonic clonic seizures and have been looking at
ways to try and do remote tracking.

The #1 feature request I would have is the ability to nominate a mobile number
to get an SMS alert if a seizure is detected.

Is there any chance of getting early access to this ? I'd be really happy to
be an Alpha tester and would be highly motivated to give you guys as much
feedback as possible from the p.o.v. of a family using it to monitor epilepsy.

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yatoomy
Thanks for the feedback! Would love to hear of anything else you'd find
valuable. What do you want/need? IYO

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whyleyc
So for me I think the killer feature would be the SMS alerting. Other features
which would be just below that:

(1) Ability to export raw data (to .csv ?) and graphs (to .xls ?) in case we
wanted to run our own analysis

(2) Ability to markup the data with "events". For example if someone had a
seizure we could record it against the data set, or mark any false positives.

(3) If you enabled (2) and had buy-in from your customers about using this
data you could have a very powerful data set to improve your seizure detection
algorithms by looking for common patterns in the data set.

Then slightly lower importance would be:

(4) Community forums where users could exchange ideas, tips, experiences etc.

And finally:

(5) Better platform support (iOS, Apple Watch etc), but personally I think it
would make sense to prove the product and feature set on 1 platform first
before branching out.

Have sent you an email in case you want to discuss any of this in more detail.

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mcmancini
This is a great idea (and name!), but does this fall under FDA regulation? I
haven't kept up with the FDA's current policy on medical apps.

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NigelS
I think you can get around the red tape if the app doesn't make medical
recommendations. As long as it just tracks the data, I don't believe it would
need to be registered as a type-2 medical device.

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mcmancini
But from the landing page:

 _An individual 's data can help adjust their medications, change eating
patterns and maximize sleep schedules._

That sounds like it's being used to guide treatment.

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yatoomy
What if we dont recommend treatment...more so utilizing the analytics they
dont track. We wouldn't recommend, every case is different. That is between
the user and their medical professional

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mcmancini
I would guess that collecting data in this case could still fall under
regulatory preview, and that you would also need to qualify your sensors
(Pebble) too.

It really would be best to speak to someone familiar with Canadian medical
device data. Much cheaper to do things right from the start (e.g., develop
under IEC 62304) than to fix things later after getting a nasty gram from the
Canadian FDA equivalent. Maybe through very careful marketing you can work
around potential problems, or maybe not. I think that this project is in an
area that requires an expert opinion, however.

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georgehaake
Silly to move forward with medication dosage and other management with just
generalized tonic clonic seizures. Leaving out partial complex seizures and
the like would be required information. Most temporal lobe seizure patients
have a much greater partial to generalized seizure ratio.

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yatoomy
Very good point. More long term. Really this is facilitating better
communication and tracking between patient and health care professional

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program
Great device to be used during the sleep.

As an epileptic I doubt that this kind of device "can help them (the
epileptics) adjust their medications." My neurologist adjust my medications
every 6 months after studying my blood analyses, standard EEG and sleep EEG.

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yatoomy
Very good point. Updates soon :)

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georgehaake
Also these seizures leave post ictal symptoms to make such seizures notable to
the patient. Partial seizures not so much. Those complex partial and absence
patients are the target group for benefit.

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yatoomy
Great feedback!

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dj0
As someone who has seizures I find this to be really awesome but I the name
seems a little odd.

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yatoomy
Working title? As someone with family that has epilepsy, its just something
i've wanted to do for awhile :)

