Horrifying

In the span of less than a week, the food allergy community has suffered not one, but two losses to anaphylaxis.  

The stories are horrifying...and hauntingly, chillingly similar.

A young adult -- this time a girl -- was likely exposed to her allergen due to cross-contamination in a food she ordered.  She suffered what has been described as a "severe" anaphylactic reaction.

She did not have her epinephrine with her.


A high school junior was given a s'more containing peanut butter at a homecoming bonfire.  Not knowing it contained his poison, the boy took a bite, and began experiencing symptoms of anaphylaxis, including vomiting.  His friends drove him home.

He did not have his epinephrine with him.

My heart breaks for their families, their friends, their communities.  I am anguished when I think about the senseless loss -- strong, vibrant, healthy and looking toward the future one minute and...dead a few hours or minutes later.

The girl was embarking on a new chapter in her life -- college.  I imagine she was filled with plans for the future.  According to her cousin, she has always been "very particular about letting whoever it is that is preparing her food know" about the severity of her food allergies.  I can only imagine that this time there was a mistake -- something gone horribly awry somewhere in the order/preparation process.  My guess is that we will never know for certain where the breakdown was.  And, as hard as the not knowing is, it is even harder for me to know that maybe, just maybe, her story could have ended differently had she had her epinephrine with her.

The boy had a promising future -- he was described as having a remarkable presence.  He was an entertainer, and a charismatic bassist in a band.  He planned to attend college in Chicago majoring in music and theater.  The boy had mistakenly eaten peanuts in the past, but, according to his father, "those incidents ended with an emergency room visit, some epinephrine and he was good to go."  Maybe, just maybe, his story could have ended differently had he had his epinephrine with him. 

The girl was Andrea Mariano.  
The boy was Simon Katz.


Sadly, these two names join what is a growing list of children and young adults who have died after experiencing anaphylaxis when they did not have their epinephrine with them.

Ammaria

Tanner

Giovanni

Sabrina

Scott

Dylan

Andrea

Simon

There are countless others.  The pain and senseless loss in the food allergy community is overwhelming.  As I re-read Ammaria's, Tanner's, Giovanni's, Sabrina's, Scott's and Dylan's stories, I was reminded again and again of how, had they had their epinephrine and been able to administer it promptly, at the first sign of anaphylaxis, their name might not be on this terrible list.

I haven't been sleeping well since learning about Andrea's and then Simon's deaths.  All I have been able to think about is that I must do something to try to stop this.  I don't know what that something is, or if it will be a series of small somethings...or if more than anything it will be my supporting Susan in her efforts to teach her peers how important it is to stay safe...to absolutely and always carry epinephrine...and since I don't yet know what it is, or how it will come together, I'm going to go out on a limb and do...this.


Here's the thing:  NO ONE plans to have an anaphylactic reaction, ever.
While I am sure there is an exception, I have yet to meet a child (or an adult) who knowingly eats a food they know could kill them.

We know that past reactions do not predict future reactions.  According to Dr. Jones, from Rocky Mountain Allergy in Utah, "It is unpredictable what will happen to food allergic patients with exposure to their allergens.  They may have a mild, moderate, or severe reaction upon exposure, but that response does not predict future reactions and it does not equate to the 'severity' of a food allergy.  Further, the amount of food needed to elicit that response is also unpredictable and not consistent."

So, just because a person has never had a severe reaction to their allergen in the past there is no guarantee that he or she will not have a severe reaction in the future.

In this case, past "performance" is not a good predictor of the future.

As parents and members of the food allergy community, which grows in greater number daily (despite the losses), we have a huge responsibility to teach our children, tweens and teenagers to carry their epinephrine wherever they go, whenever they go anywhere.  And we must also make certain that they know how to recognize early signs and symptoms of anaphylaxis, for research shows that delayed administration of epinephrine can have devastating consequences.

Research tells us that past reactions are not a good predictor of severity of future reactions.  That said, in looking at the recent food allergy deaths, one of the most frightening themes is that most of these children and young adults had not had a previous serious anaphylactic reaction.  While I want to be ever so careful not to make assumptions here, I suspect that because they did not have a history of serious anaphylaxis, they were comfortable that their safety measures were sufficient.

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.

While those of us raising children with life-threatening food allergies are instructed that strict avoidance of all known or suspected allergens is the best (some might argue only, but with all of the research being done, I purposefully chose the word "best") approach, and while most parents of children with life-threatening food allergies are constantly vigilant, people must eat.  And with consumption of food comes risk of an accidental exposure to an allergen.

Of those individuals with a food allergy, approximately 25% will have a near-fatal anaphylactic reaction at some point in their lives.

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.

There are an estimated 90,000 food-allergy related emergency room visits every year in the United States.  

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.


Every three minutes, there is a visit to the emergency room due to a food allergy induced anaphylactic reaction.  Every three minutes.

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.

The math on the above figure suggests the number of food-allergy related emergency room visits is actually much higher than 90,000...more like 200,000 in a given year, although that is only an estimate...

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.


The American College of Allergy, Asthma and Immunology (ACAAI) says nearly 15% of patients have an accidental reaction each year.  

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.


Food-allergic teens and young adults are more vulnerable than children living under their parents' watchful eyes or adults with years of real-life experience.  Lack of experience combined with the desire to blend in with peers leads to greater risk-taking.  As young adults move away from a controlled food environment to "eating out every single day" the risks multiply.

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.


"Teenagers are absolutely a higher risk for death from their food allergies.  That can be for a couple of reasons.  Certainly one of those we think is because they get a little less careful...they sometimes take a few more risks and try things that they shouldn't be eating...[and] they are also less likely to carry their epinephrine."

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.

Susan has been self-carrying her epinephrine since she was three years old.  At the time that she began self-carrying her epinephrine, she was starting a district-run preschool program and the options were limited:  have her self-carry or have her epinephrine locked in the nurse's office (diagonally across the hall from her classroom) knowing that the nurse wouldn't always be there.

There was no choice, at least not in my mind.
Knowing that epinephrine was the only thing that stood between Susan and the risk of death, I wanted that medication on her body.
  Always.
  At all times.


I haven't issued strong opinions about what others with food allergies should be doing during the course of our journey, because I really do not feel it is my place -- every child is different.  Every family is different.  What we did -- first in PRROTECT and now in private OIT -- would not work for everyone...for a myriad of reasons.  I understand and respect that.

But, in the face of a growing crisis of unnecessary, heart-breaking and preventable loss, today I am going to say that (with exceptions, I know -- I can think of some...exceptionally young children, child with developmental or cognitive disabilities, etc.), every child with food allergies should carry his or her epinephrine.

Let me say it again...
     NO ONE plans to have an anaphylactic reaction, ever.
     And that is why we must teach our children to always be prepared.

Let me say it again...
      Every child with food allergies should carry his or her epinephrine.

For Susan, her fanny pack...and now her purse...have been such a key part of her life that she feels almost naked without them.  She wears her cross-body purse in our house.  There is video footage of her speaking to nearly 500 guests at the FARE Spring Luncheon in 2014 wearing her purse.  When Susan sleeps, her purse is on her pillow.  It used to sadden me that she felt the need to have it by her even in her sleep...but now, it reassures me.

When she turned thirteen, I gave Susan a rainbow of purses -- pink, purple, blue and teal (favorite colors, all, with the exception of orange, for which I am on the hunt!).  I expect her to carry her epinephrine everywhere she goes, and because she always has, (at least thus far), she always does.  

Every time I learn about another child, teenager or young adult who dies from anaphylaxis, I share their story with Susan.  I don't want to frighten her, but I need her to truly, absolutely, without question understand the risk.  

Yesterday, as I was telling her about Andrea, she looked at me and said, clearly:  "Mom, I will always have my epinephrine.  And I know what to do with it."  I believe her...after all, she made a video called How to Stay Alive...and I have as much confidence in Susan as I think I possibly could...but that doesn't mean I won't check in with her regularly.

But this isn't just about Susan.
This is about all of those living with life-threatening food allergies.
This is about effecting real change -- saving lives through education and awareness.


NO ONE plans to have an anaphylactic reaction, ever.

Remember that -- NO ONE plans to have an anaphylactic reaction, ever.

Which is why we must teach all children living with food allergies to be prepared, ALWAYS.