App for Parents of Kids with Severe Allergies

[rebekahc]

GN - I use the Around Me app.  I'm interested to hear if TT has a different/better one for me to explore...

[twinturbo]

findER
Find-ER

Two different apps similarly named. Of the two I use findER more often. Around New England - New York I used it more because the states and roads are less node-like as they are on the left coast.

Thanks for the words of wisdom on market research.  Unfortunately I don't know of any other way to do market research other than to have the kind of conversations we are having here, which is why I really appreciate all of the open feedback from the community. I'm all ears if you have any pro-tips to share?

Ain't your ears you need to use, my man. It's your wallet. No joke. Pro tips cost pro dollars. I know a fantastic consultant you could hire. He's rather attractive, too.

[GoingNuts]

Thanks ladies, I will check those out. 

[Jim Sweet]

Hi LinksEtc
So far I've met with 2 food allergy organizations and hopefully I'll meet with a few more in the next 2 weeks.  They have been extremely helpful but I would say this message board has been really helpful as well    I've reached out to FARE and some local allergist but I haven't heard back from them yet.  I'm going to follow-up with them next week though.  I'm still trying to work through all of the ways to mitigate the risks you mentioned but unfortunately nothing I've come up with seems to completely address all of those risks.

[CMdeux]

It just seems like the effort required to bring to market and promote this kind of app would be FAR better spent on better patient education (to address barriers to proper preparedness in some demographics-- and barriers to carrying epinephrine), and to promote better RECOGNITION of atypical anaphylaxis in first responders.

Otherwise you're generating a work-around to 911 that has some serious structural limitations.

[SilverLining]

Have you spoken with food allergy experts (organizations like FARE, leading allergists)?  This is not something where you want to be relying on information from a message board.

What if a baby is given an adult dose of epinephrine?  What if people use this who have not been diagnosed by an allergist ... for example, maybe they have a food intolerance, or maybe they have a mental disability?

Unless you get this product backed by an organization like FARE, it does not sit well with me.

Add to the what ifs.....what if a person thinks it's anaphylaxis and it is not?  What if they are having an anxiety attack?

It's one thing to take on that responsibility for yourself, your child, or a child in your care.  But to be on a call list specifically to respond, I think as an individual you would have to take some responsibility if you gave the epi in error.  Paramedics can check your pulse.  Maybe fire/police can as well?  But how many have the equipment in their home?

~~~~

I have had anxiety attacks that closely resembled anaphylaxis.  And it's not that uncommon.  When ds was training he responded to an emergency call and the patient was positive he was having an anaphylactic reaction because of something he ate.  He was wrong.  And epi was the last thing he needed.

~~~~

To answer your question, I'm not sure whether he sometimes stores his own bag, or always does.  Sometimes he drives his own car, so he would have a bag for that.  But, I'm not sure if he always keeps it, or just picks it up when he's got a job.  Other times (for example working a kids football game) they want an ambulance on-site so he drives it, and the supplies would be in the ambulance.  (The reason for wanting an on-site ambulance is to save the time of waiting for 9-1-1 to respond, especially if they are not close, and it's a high risk for injury.)

[Sneaker]

Hi, Sorry that I have not posted again till now.  I have been busy and also new to posting here.  I have been reading all the posts though.

Jim:  To answer your question.  I will have to let you know if I will brainstorm about what type of people would not carry or administer their own Epipen. 

Also, I still do not know how this app could or would work, but I am thinking mainly as a backup or secondary plan for my teen.

[twinturbo]

Sorry to necro a dormant thread but I'm adding two new apps to my roster: MedicAlert's prEMISE & eTrak. MedicAlert is offering a GPS product with panic button to use with their monitoring system. You can not only trak but set the radius to auto-alert parents when the tracker leaves the preset area.

For example: I set radius around the school, if the tracker leaves the area I get a text alerting me. No more surprise field trips into remote woods which has happened before. If DS1 wants to contact us for any reason it's possible to relay through MedicAlert with a 2 second button push.

Where this is all going to fit in with the gold standard EAP, protocols TBD. We also plan to submit this as a medical expense come tax time.

I should probably denote I purchased the MedicAlert eTrak so we're testing it out now.

[CMdeux]

Ahhh-- interesting, TT.

[twinturbo]

DH and I are exploring the eTrak monitoring via app and website. The GPS works great and the interface provides what one would want to see like location, address, battery life-definitely not too busy or overdelivery of information. What needs work is the difference in limitation between the web interface and mobile app for realtime updates. Also exploring settings affecting battery life for school use.

Teachers and school have been receptive to the device. Because its failsafe is to call law enforcement if no one can be reached when activated I told them use it if you need it for anything. Not as a replacement but if that's all you've got or whatever use it.

[twinturbo]

Thus far we've had some unacceptable issues with the eTrak devices. I've been in talks with MedicAlert's marketing to address this business-to-business because it needs resolution via internal channels. Hopefully MedicAlert will iron this out with eTrak to let them know they will have to step up technical support for their service to MedicAlert customers who are unlike the majority of their other customer base. Unless the unit is linked to the MedicAlert service a key component is unusable: the ability for MedicAlert to monitor and follow through on emergency activation.

Update: MedicAlert Consumer Relations followed up with me this afternoon. We revisited the support plan eTrak is providing MedicAlert where I made the suggestion that, even at the cost of price point, that eTrak should build into its response protocol a way to immediately flag a MedicAlert customer maybe even moving to a separate call line for us, or some sort of internal way to flag us as a medical priority. In the next couple of weeks what I assume are the managers for this service to get together to review their contract. Supposedly they plan to amend the service contract to resolve a fasttrack system for MedicAlert.

I should note that the MedicAlert GPS is a product powered by eTrak GPS combined with an additional monitoring linked to MedicAlert. You get a small black "panic button" device with a single button. A one second push force updates the device. A two second push triggers a silent alarm that sends text messages and/or emails to designated phones (usually parents, whatever you program). MedicAlert also immediately calls designated parties, if no parties can be reached EMS/law enforcement is called in by MedicAlert to that GPS' location.

[twinturbo]

Update for this week.

We're on our third device. The web tracking in a browser is fine and I think finally the battery issue has been taken care of. The update for iOS 7 has knocked the Apple app out of commission to track the device. Android app tracking was unaffected therefore still working. The engineers at eTrak have been on fixing the iOS app for a while hopefully it will get resolved soon.

DH and I are going another round with MedicAlert management once the app is sorted out. Right now we have to stay on eTrak (who makes the device) to make sure it has full functionality. At this point unless you're willing to stick through the early stages of debug and you just happen to have an experienced engineer/product marketing manager on hand (DH) I can't recommend the product quite yet.

MedicAlert portion of the service is great. eTrak needs to step up its game. It is getting there. It's a new service for this product so we fully expected to work through this. I truly feel a very worthy, dependable service will be on the other end of the early debug.

[LinksEtc]

"New App Seeks to Connect Those Carrying Their Epi Injectors with Those Who Left Them Home"
http://asthmaallergieschildren.com/2014/04/24/new-app-seeks-to-connect-those-carrying-their-epi-injectors-with-those-who-left-them-home/

The brainchild of young American entrepreneurs Jim Sweet and Joe Friedman, AppiPen will connect those who are not carrying with those that are within a practical radius.

[sneaker]

Glad to see a new post on this app topic.  LinksEtc, thanks for posting the news.

I continue to have an interest in this app for my teen.