And Yet Another Death

[GoingNuts]

http://allergicliving.com/2014/12/11/4th-young-man-dies-of-food-allergy-causes/

[SilverLining]

It's the fifth death, not the fourth.

http://www.thehindu.com/todays-paper/tp-national/tp-karnataka/16yearold-dies-of-egg-allergy/article6680841.ece

[Macabre]

Well, the fourth in the US. I'm sure there have been quite a number of ither deaths around the world in the last month.


I wasn't aware of Casey Ryan.

[CMdeux]

ANY death is one too many.    

Going to go hug my daughter now.

[Macabre]

http://fox40.com/2014/12/12/mysterious-allergic-reaction-kills-roseville-girl-during-hawaii-trip/

Another child--but from unknown causes.http://fox40.com/2014/12/12/mysterious-allergic-reaction-kills-roseville-girl-during-hawaii-trip/

So the people we know about in this community who have died since the beginning of November:

Joseph DeNicola, 7

Chandler Swink, 19

Jaime Mendoza, 16

Paige Carpenter, 11

Casey Ryan, 29

Nutan Ajay Tirumalasetty, 16

Edward Horan, 24


There are no words.  It is overwhelming.  My heart is breaking for their families. They were here and now they are not.  It is utterly tragic.   

[CMdeux]

What is worse is that I find that the series is extraordinary for only two reasons:

1.  The media is picking up their stories (usually such deaths... and I personally know of about four over the years) vanish nearly without a trace, which is even MORE heartbreaking, because it feels like...  well, like they didn't matter enough...  and that is unspeakable to me.  Truly, I am crying as I type this.  That adolescents (and they almost always are) should just-- be GONE like this-- is horrific.  That food was what cost their lives is so cruel and awful.

2.  They are so predominately male-- this has got to just be a statistical fluke, but the numbers are usually skewed the other way.  I believe that the actual statistics are about 2:1 female to male in that adolescent cohort-- mostly because they tend to handle their reactions as Chandler Swink did-- by not making waves even in the face of florid anaphylaxis-- not inconveniencing others, etc.

[SilverLining]

I wonder how much difference carrying a purse makes. Maybe if the Allerject becomes more known, more boys will carry epinephrine.

[YouKnowWho]

I wonder how much difference carrying a purse makes. Maybe if the Allerject becomes more known, more boys will carry epinephrine.

Not just known, covered at a significant discount so that the co-pay is affordable.  Even with Mylan's coupons, Epi's still cost me $80.  Allerject/Auvi-Q is over $200 the last time I checked.  For others, the prices is significantly higher.  And I know it's like car insurance, you need to pay it and hope to never use it but it's a huge financial beating.

And how many people say - well Benadryl worked the last time?  Cost of Benadryl is nothing compared to life saving meds.

[SilverLining]

Yes YOuKnowWho.  It needs to be covered.

[CMdeux]

The cost of treatment-- generally-- is an issue for Americans in particular.    Honestly, I think that is a huge factor in the decision to use epinephrine even if you have it.   

[YouKnowWho]

The cost of treatment-- generally-- is an issue for Americans in particular.    Honestly, I think that is a huge factor in the decision to use epinephrine even if you have it.   

If I sent all three kids back to school and keeping in mind that I can only use the $100 off co-pay option five times (if the coupon is offered next year), it will cost me close to $800 - not including inhalers if I have all the epi-pens we need.  Now it's over the course of two three months as they have to be staggered (because you know that stupid rule about one set per person every 30 days).  No kids, you cannot do after school activities because those need their own pens (even while at school because ASA does not have access to the nurses meds) nor can you self carry because you need your own meds, nurse has to have meds and frankly I don't trust you not to lose them, so we will have another set at the house.  ($2000 in meds that we never hope to use if we provide pens for school, self carry and after school activities  ).

[fuji]

I'm curious if there is a statistical data base of food allergy deaths somewhere? Sometimes people look at me like I'm a loon  when I say that food allergies can be deadly. I must be exaggerating?!! Right?!  No, I don't think I am but that's what I think goes on in some peoples heads when I talk to them. It would just be nice to actually have a source to cite. An actual data base that breaks it down into what food, age, where (restaurant, home, etc.) and if they had prior knowledge of the specific allergy. I can tell someone, "yes, many people die from peanut allergy" but having a statistic is more valid in many people's minds. "Yes, there were 2 deaths from peanut allergy last year and 4 the year before, they were all in their teens except one. 3 of them were previously diagnosed and the other ....." I think it would even be helpful for newly diagnosed people for understanding that it does happen and in what context. Even though my daughter (diagnosed at 13) understands and appears to take it seriously it would be nice to show her something like that. She is a thinker and very literal, if she could see it in a database along with reading a few of the stories she's already seen I think it would cement if for her.

[CMdeux]

There are a few peer-reviewed studies published in major medical journals that break things out that way, Fuji.  The problem with that as a meaningful source of data on the subject is that they are inherently a collection of anecdotes.  EVERY death is unique, obviously, because so many factors come together in a fatal reaction-- but the larger issue is that anaphylaxis deaths are NOT reportable to any agency.  Not even internationally, at least that I am aware.  It is possible that NHS keeps such records in the UK, but even if they did, one need only examine the peer reviewed studies that find that at least half of anaphylaxing patients are not recognized and treated properly by EMT/EMS or by emergency room physicians either one.  It's unlikely that they'll be coded with anaphylaxis as COD if a physician didn't recognize an allergic reaction in-progress while they were trying to keep the patient alive.

KWIM?

The numbers are low-- but nobody is really sure just how low.  This is a bit like looking at hospital errors, though-- there is a huge amount of inertia in having solid numbers there, because they certainly aren't going to make emergency responders and ER's look great. 


 

[SilverLining]

I'm curious if there is a statistical data base of food allergy deaths somewhere?

None that I've seen. And if there is one, it won't be accurate.  Recently there was an article about a woman who had died. The coroner listed heart attack (I think). Whatever was listed was correct, but what they failed to mention was that it was caused by anaphylaxis.

[CMdeux]

Exactly-- deaths are caused by cardiac failures or by "asthma" or "respiratory collapse/failure."  THAT is how those things are likely going to be recorded.  Those are natural endpoints for anaphylaxis, however.  One cannot just assume that such deaths are caused by anaphylaxis, however-- because other processes can lead to them, as well.