App for Parents of Kids with Severe Allergies

[Macabre]

Well, recently I made a decision like that.

Admittedly, the connection may seem tenuous, but to me it has similarities. 

We were recently at Universal Studios.  Given our set of FAs, I assume we can eat at the park and only take a small purse that can go around my waste.  (Actually DS took a cinch sack and did take some Clementines, but the point is, we travel as light as possible when we go to amusement parks, and the cinch sack had to be put in a locker adjacent tothe ride anyway.)  My purse of course had two epis (and DS had two Auvis in his cinch sack--temps were fine for this--and an Epi in the bottom, buttoned pocket of his cargo shorts--an Epi works better in rides in that pocket than Auvis--they tended to fall out, even on rides that did not go upside down). 

I also had 6-8 WetOnes individual wipes. 

A father and son were in front of us, and the son--a teen older than DS--had a nosebleed. It was considerable.  The line was basically stopped while they did some maintenance on the ride. So we were going to be there a while.  Because people had to check bags into a locker before getting in line, no one had tissues with them.  I gave him one WetOne--then another.  His nose was bleeding a LOT.  But I did not give any more. He could have gone through all my WetOnes, and I was carrying them for DS' safety (he's developed hives at another amusement park from contact). 

I suggest that if they wanted to get tissues at the nearby restroom we'd hold their place in line.  They didn't want to.  They also didn't know I had more WetOnes, fyi. When it started bleeding again 10 minutes later, someone else asked me for a tissue, and I said I didn't have any. 

Really--it was early in the day, and I had to have a means of protecting DS.  And like I said--this kid could have easily gone through my entire supply and it wouldn't have helped him.

In the US, we are never without the ability to get extra Epis.  That is our particular situation.  Between my script and DS' script, we could always find a CVS or another drug store and get one.

I have no problem lending one Epi and calling 911.  Or two.  We travel with six.  And can get more.  If a person required all the epinephrine we had, that might be a different matter. 

But knowing I could help, I could not let someone suffer anaphylaxis and offer an epi on me, but that's just me. 

[twinturbo]

But would you use this as an app? Most of us would nail someone anaphylaxing w/in line of sight or come across but I wouldn't respond to some app putting out an APB. There's no way in hell I'm leading myself to an undisclosed location by an unknown party. On the other hand OP says it's for families to track one another and off duty EMS.

[Macabre]

No, I wouldn't use this app, but a teen might. 

Meh, I use FourSquare and don't mind someone else in the building seeing I'm there (they can't see who I fully am, btw).  But that aspect doesn't bother me at all. 

And I think that this is a better case than the worst case--death because there was no epinephrine around.  We read stories all the time about that being the case.  Based on my personal experience, I actually do not fully trust EMS.  But statistically speaking, at much of the time they know what they're doing.

Would I want my son to use this app?  If he were in the midst of dinner and realized he forgot his epis and realized he was having a reaction I'd want him to call 911.  But I would want him to use the epi before EMS got there. Because my goodness, they might make the mistake of not using epinephrine, and then what?  Also, we have been in a situation, a bad, bad bike accident when EMS did not arrive for 30 minutes and Kiddo was losing a lot of blood and most of his face was fractured. 30 minutes. With three calls to 911. 

No, my trust for EMS is NOT high (that and the fact they "dx" me as not having anaphylaxis in December when I had more than two body systems reacting after ingesting sesame AND the ER doc did say it was anaphylaxis (and I started feeling symptoms return in the ER and they gave a second dose of epi). 


So--if for any reason my DS forgot his epis (you may think that you will ensure this never happens because you are very careful, but wait until your kids get older--it can happen) and he was having a reaction, I'd sure rather him have someone's epi ASAP unless it had yellowed.  He absolutely needs to call 911, but I can't tell him to rely on them to be johnny on the spot or to do the right thing. 

[Macabre]

Everyone posting in and reading this thread should read this. 

https://www.facebook.com/groups/POKWASPeanutAllergy/permalink/10151589089902876/

The second response, from Angel Solgot--read her story.  It will give you chills.  EMS totally screwed up.

[twinturbo]

So Jim's app would have some merit and potential users.

[Jim Sweet]

Hey guys I'm sorry to have to apologize again for the slow response.  I was monitoring this thread every day but I didn't realize more people were posting until I saw a link to go to the 2nd page.  I've read through all the comments and I'm going to try to address them all now.  Thank you guys so much for your comments, suggestions, and questions.



Twinturbo:
The app started by wanting to help people (anyone) in emergency situations by connecting them to off-duty EMTs, medical personnal, and other responders.  I realized that trying to help everyone is a bit lofty, especially before launching, so I'm trying to focus in on the use cases that could give the most benefit.  Its good to know you use an ER finder app.  I was planning on implementing that kind of feature in my app but if people like you are already using it then maybe it's not necessary to duplicate it.  Also I think I really like that egg-timer idea.
   
PurpleCat
Thanks for your feedback and questions.  I agree that you and your child always carry injectors with you, I'm not trying to discourage anyone from doing that or from calling 911.  In the "work flow" of the app I envision people always calling 911 before using my app, however sometimes 911 can't help taking too long to get to the scene.  The point of the app is to connect with responders that are nearby who could quickly offer assistance.  Its great to hear more about how valuable medical history data is.  I was thinking of adding this feature into version 2 of the app but if you think it's critical then perhaps it should be a version 1 feature.

SilverLining
Thanks for getting back to me.  Do you by any chance know if the company stores his medical supplies and tells him what to pack or if he is in charge of that himself?

GoingNuts
That is mostly correct.  The point of the app is to alert nearby off-duty responders who wouldn't get the 911 alert, but the option to alert 911 will be a part of the work flow of the app.  The app could be used for a lot of situations but I think trying to help everyone is a bit of a lofty goal and anaphylaxis feels like a use case with the potential to do some of the most good.

Macabre   
Thanks for bringing up liability. I don't know much about Canadian law but I am talking to a lawyer who specializes in this good samaritan law in the USA.  The lawyer says that people could not be held liable for administering an epiPen but we have just started talking and I will keep you posted as I find out more.  From what I hear from the EMTs I talked to, there have been very few cases of good samaritans being sued and 0 cases of them being sued successfully.  I know that in an emergency there are potential risks to the responders on multiple fronts and I'm trying hard to find ways to mitigate those risks by looking at how other organizations, like 911, handle risk.   One consideration I'm weighing is to forget about people with eipPens and focus on responders who carry Benadryl or something similar.  I've talked to some EMTs about how they respond to anaphylaxis and they said the most important part or responding is to get the patient an anti-histamine, such as Benadryl, which doesn't carry the same liability since it is an over the counter drug.  Even if both of those ideas seem too risky though responders can still be protected by preforming first aid, CPR, and using an AED if necessary.
The app will be free to send and receive alerts.  I've come up with few potential ways of recovering my cost that I still need to vet, but I will not be selling user data or advertising on the app.  I don't have a food allergy.  Most of what I know about LTFA comes from my friends, people in the community, or personal research.  I've also taken 1st aid, CPR, and AED training which covered anaphylaxis.
That is interesting to know about the situation with the ER vs EMT.  Did the EMT know you had injected yourself?  I've heard that insurance companies always have to cover the cost of an ambulance in the USA.  I hate to ask about location information online and if you prefer you can PM me, but did the incident you described take place in Canada or the USA?
Thanks for sharing your story from universal studios.  My takeaway from that is that a map of places to replenish your epinephrine supply is going to be a critical feature.  The study you linked to is also interesting, I'm going to have to review this with my EMT friends to see why this is.  If you can think of anymore suggestions, comments, or questions I would love to hear them.

Sneaker
Thanks for mentioning that some people have special circumstances that prevent them from carrying an epiPen.  I can think of a few types of people, like my cousin, who would not be able to carry or administer their own medication.  I would love to spend a few moments brain storming with you about what kind of people would not be able to carry or administer their own epiPen? 

hedgehog
Good point about teenagers.  This may be a useful segment to focus on.  I'm going to look into this a lot more, especially because SilverLining brought up a good point earlier that this app may discourage people from carrying their epi.  If teens are already not carrying their epi with them this app could be useful, but if they are still carrying their epi most of the time I want to be sure that I'm not encouraging them to not carry their epi.
 
CMdeux
That is a great point.  I still don't know how I'm going to recover cost but I do hope that I can recover enough to reimburse people for using their epiPens.  It also came up in this thread that I should have a map of places where you would be able to get a new epiPen.  I know that doesn't alleviate all the tension from using your epi to help someone else so I'll working on ways to mitigate the risks of the responders.  Thanks for the great link! Any chance you know of other stories like this?

[Macabre]

I am on Minnesota. No, insurance does not have to cover ambulance rides. Had I the ambulance company not "corrected" the bill mine would not have.

An ER map function could be helpful. But a map of where to get more epinephrine not so much. People k ow where to get their scripts filled. CM's question is about getting another script from a doctor, being able to get another Epi if insurance doesn't cover it (say you had just picked up your epis two days before using one on a stranger and your insurance won't cover new ones for 30 days. AND even with insurance some people have to pay $200 or more for their epis. With insurance.

So if you are going to use an Epi on a stranger, you could be leaving your child or yourself at risk. 


And frankly, I would have expected the developer of an app like this to know that.  And that's why I asked if you have a LTFA.

[twinturbo]

Listen to Macabre, Jim. I don't mean to be cruel but this exactly what your burden of market research is as a developer. Regarding the egg timer app--better hurry. My husband loved the idea enough to consider developing it himself, and he has brought medical devices to the market before.

[CMdeux]

I've talked to some EMTs about how they respond to anaphylaxis and they said the most important part or responding is to get the patient an anti-histamine, such as Benadryl, which doesn't carry the same liability since it is an over the counter drug.  Even if both of those ideas seem too risky though responders can still be protected by preforming first aid, CPR, and using an AED if necessary.

Okay-- setting aside for a moment the basic fact that this is bad advice from an EMT who really ought to know better...


I am going to echo Macabre's question here-- why don't YOU know better?

This is-- seriously-- just medically incorrect advice.  Period.

I do worry that this isn't much of a back up plan, and that the bottom line is that this probably isn't something that has much of a market-- and even if it does, that points up a problem in the way that our medical system manages and responds to, and teaches patients about... anaphylaxis.  Particularly FOOD anaphylaxis.

1.  Avoid allergen
2.  Know that 1. is never going to be fully achievable-- plan for mistakes to be made
3.  If you have a food allergy, you're at risk for anaphylaxis.
4.  If you are at risk of anaphylaxis, you MUST plan to manage anaphylaxis without warning at any time in the future-- period, full stop.

5. Management-- at a minimum-- requires you to carry and be prepared to administer a dose of epinephrine.


The other thing that I worry about with an 'app' like this is that this really does sort of make all of those accusations that we hear all the time... true.

You know, the ones where people complain that we are "expecting others to do it for us" and the like?  Well, carrying your own epinephrine doesn't get much more basic in terms of management.  It's not that I'm unsympathetic to people who have particular challenges in their lives when it comes to doing that... but... it's really not a negotiable item.  I worry that this kind of app could genuinely lead some people (even if it's only a few of them) to think that they "have it covered" when they don't.  The odds are VERY slim of actually finding epinephrine when you need it using this-- you're relying on voluntary compliance, and honestly, I would not sign up for this.  If I encounter a situation where I can clearly help (as the Hoffmans did) then OF COURSE, I would do so.  Just as I would give CPR or use an AED. 

I do NOT want my daughter to ever have the idea that someone else is going to bail her out.  Not ever. 

That's like writing an app for a diabetic to "find insulin by type."

[Jim Sweet]

Thanks for replying so quickly everyone.

Macabre:
Thanks for sharing your story.  Look like the information on my side was wrong.  And thanks for clarifying CMdeux's point.  It might be a good idea (though a lot of work to help) people get new prescriptions from their doctor and to have insurance kept in the loop or even greater yet, getting them to cover a new epi.  Even if it is impossible though, I think we have started to focus exclusively on the responders being people who are using their own epiPens to help others.  Responders will also be off-duty EMTs, medical practitioners, and other trained personnel who would not get the 911 alert.  I'm not trying to steer the conversation away but I felt that this clarification was worth mentioning again.

twinturbo
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?

CMdeux
I only know what my sources tell me so thanks for correcting me.  I don't know if kids or adults would use this app an excuse to be unprepared but that is something I'm going to look into.

[rebekahc]

IMHO, it sounds to me like you have an idea for an app and you think it's awesome.  You have little to no real life experience with LTFA, but you've decided the LTFA niche market is where you should focus.  You seem to be trying to make our needs fit your idea of what we need (i.e. your product) rather than actually researching what could be viable tools for our community.  Square peg...round hole.

It also doesn't seem you've considered those on the other end of the app.  Why would they want to be at someone's beck and call when they're off duty?  If that were the case, it seems 911 dispatch would have already implemented a process whereby they could page or in some other way seek out nearest responder either on-duty or not.

Does Good Samaritan even apply to professionals (EMTs, doctors) or are they held to a higher standard increasing their liability over that of a layperson? 

[Jim Sweet]

Hi rebekahc
you're right in saying that I started with an idea and now I'm looking to see if/how it might be helpful.  I haven't decided anything yet and if this isn't an area where my app can be helpful then this isn't an area where my app can be helpful.  You would think 911 would have something like this in place but the fire departments I've talked with don't.  I don't think Good Samaritan applies to professional responders the same way it would to a non-professional (at the very least), but that is something I am still looking into since I'm not a lawyer.  I've gotten mixed feedback from professional responders in regards to their willingness to participate while off duty with most of the feedback on extreme ends.  Either people were 0% interested in responding or they were really excited to be responding. 

[LinksEtc]

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.

[maeve]

Stumbled across this and thought it relevant to some of the discussion earlier in the thread.
http://www.medscape.com/viewarticle/780414

[GoingNuts]

TT, what ER finder app do you use?