photo
Photo by Rebecca Gould Photography
Monday, May 16, 2016
Saturday, May 14, 2016
Emergency Landing
When Susan was
almost four, she had an anaphylactic reaction on-board a Southwest Airlines
flight. We had done everything “right.”
We had booked
the first flight of the day.
We had informed
them of her peanut allergy.
We had
pre-boarded and wiped her seat and surrounding area down.
We had covered
her seat with a Plane Sheet (sadly, I think the company has gone out of
business -- but think ultra soft mattress pad for an airplane seat)
We brought our
own snacks.
And yet, still…
Within minutes
of boarding, her eyes were red, watery…and her face started to turn an alarming
shade of red. I gave Susan Benadryl
(standard protocol at the time), and told myself that she would be fine.
After all, she hadn’t eaten anything.
And yet. as we
gathered speed, hurtling toward departure, Susan suddenly began to have
difficulty breathing.
I pressed the
flight attendant call button.
We were
informed, over the plane’s PA system that we needed to turn the call button off
before the aircraft lifted off.
I remember
hearing Susan gag and choke on her own saliva while frantically pressing the
flight attendant call button with one hand and digging for her EpiPen with the
other.
I remember the
flight attendant coming to our row, peering down at me, at Susan…
I remember the
flight attendant calling for a doctor.
I remember the
doctor on board instructing us NOT to use the EpiPen, cautioning us that since
Susan had never had epinephrine before, the risk of administering it was too
great.
I remember
listening to the doctor, torn between wanting to do as the doctor said and
thinking -- feeling -- believing that I should try to administer the EpiPen
with my shaking hands.
I remember
Susan’s younger siblings crying, her father trying to quiet them.
I remember how
hard it was to think with all the
noise…
…the inhumane sounds coming from Susan
…my twins, who were nearly hysterical
…the noise as they prepared to make an
emergency landing…
…the noise of the passengers -- wanting to
know what was happening, why we were landing before we were ever even really
properly in the air
…the doctor, telling me to give Benadryl, to
watch, to wait…
…the stewardess telling me that there would be several ambulances waiting for us
…the noise in my head, as I tried to figure
out what to do.
I know now that
we were on the precipice of a crisis.
I know now to be
thankful for every minute we have with Susan.
I know now how
close we were to a very different ending.
While I
suspected Susan was allergic to peanuts long before she was formally diagnosed
(that’s a story for another time), that day will forever in my mind mark the
beginning of our journey for a freer, more normal life for Susan. It was that day that my husband and I
realized we were dealing with something unfortunately rare -- anaphylaxis
without consumption.
While I know
there are doctors and scientists and researchers who do not believe one can
have an anaphylactic reaction without consuming a food, as Susan’s mother, I have
lived something different. I have come
to believe that it is virtually impossible to tease apart an airborne reaction
from a contact reaction, for it only takes a trace amount of an allergen to
enter a mucus membrane…and while I know Susan did not eat peanut on that
flight, I also know she had an anaphylactic reaction to something, and I will
always believe it was to a trace amount of peanut that somehow found its way
into her body.
I remember
feeling powerless, helpless, hopeless when I realize that my enemy -- Susan’s
enemy -- was invisible. As Susan’s
mother, I was finding it hard enough to feed her safely -- our food allergy
labeling laws are such that manufacturers are not required to label for
potential for cross contact with allergens from one product to another. While I could read the ingredients on the
back of a package, the packaging simply did not provide enough detail. I was calling manufacturers and grilling them
about their plants, their production policies, trying to determine what foods
were and were not safe for Susan.
And now…now I had to worry about
something invisible?
I remember,
after Susan was stable, sitting in the quiet that often follows chaos and
wondering about the power of this invisible enemy. I remember marveling at the fact that
something I could not see had the power to kill my daughter.
I remember thinking Susan could never go
to the grocery store with me again.
I remember thinking we would never eat
out again.
I remember wondering how I would be able
to send her to school…I envisioned tiny peanut bombs all over playground
equipment and doorknobs and desks…
I remember the feeling of panic that
settled in over me, like a heavy blanket…I remember wondering how I would ever
find my way…
I remember desolately wondering what
Susan’s life would be like…only vaguely understanding the financial and social
impact of food allergies.
While I suspected Susan was allergic to peanuts long before she was formally diagnosed (that’s a story for another time), that day will forever in my mind mark the beginning of our journey for a freer, more normal life for Susan.
And incredibly,
we are getting there.
We have two years of oral immunotherapy for peanut behind us. Susan now eats 10 peanuts every morning and has a "peanuty snack" every afternoon. While her journey has NOT been easy, it HAS afforded a degree of safety and changed Susan's life dramatically.
We have two years of oral immunotherapy for peanut behind us. Susan now eats 10 peanuts every morning and has a "peanuty snack" every afternoon. While her journey has NOT been easy, it HAS afforded a degree of safety and changed Susan's life dramatically.
As I sit here writing
this, I am on a Southwest flight with Susan.
We are flying to Orlando, where she will speak at Food Allergy Research & Education’s national conference tomorrow.
I was sitting
with Susan as she completed the on-line speaker application in January. When she reached the section in the
application that required her to upload her CV, she paused, asking “Mom, what’s
a CV?” I explained. We discussed.
I proposed she leave it blank and move on. She had a different idea. She created an untitled word document with
nothing more than the link to How to Stay Alive and uploaded it into her
application. Problem solved. Even so, I never dreamed Susan would be
selected as a speaker, for it seemed based on the application that they were
looking for speakers with expertise different than Susan’s. I am so thankful that they saw the value in
Susan’s hard-earned expertise.
We are on the
last flight of the day (and, in fact, sprinted for it). We did not inform the airline of her allergy,
nor did we ask them to refrain from passing peanuts. I did not wipe down her seat, nor did I cover
it…and…while I am nervous, I am also just ever so slightly…pleased…thankful…incredulous…
Susan’s journey
has been about so much more than just eating
peanut. While I once hated peanut and
the way it restricted our lives, the way it hung ominously over any future I
tried to envision for Susan, I have come to appreciate the role peanut has
played in Susan’s life. Susan’s food
allergies have not defined her, but they have shaped her, matured her, stretched
her…made her who she is today.
Saturday, April 23, 2016
Susan's Poetry Slam: "My Kryptonite"
A few weeks ago, Susan reluctantly told me that her school had a mandatory-for-all-eighth-graders poetry slam -- after school hours. I could tell that she really wasn't all that excited about it, and initially, I sort of groaned inside, too. With three busy children, things like this are always a bit of a scheduling challenge...and it meant she would have to miss soccer practice. And while soccer might not be her biggest passion, some of her dearest friends are teammates...
But then, as we were talking about the poetry slam, I remembered something.
I remembered that last year, a boy in our community did something pretty incredible at the poetry slam.
I remembered that, with the support of his classmates, he shared what it was like to realize that he was homosexual. I remembered watching the YouTube video of his poetry slam and marveling both at his bravery and honesty and at the heartfelt support his classmates, his peers, his audience, offered him.
I remembered thinking -- a year ago -- that I wanted to attend Susan's mandatory eighth grade poetry slam.
Susan shared the details -- ALL students were required to work with a visiting poet/teacher to develop a meaningful poetry slam during an intensive three-week poetry unit. ALL students were required to read (well, ideally, perform) their poem either in their own English classroom or at the mandatory open mic night. Susan had already decided -- she was writing about the clinical trial, but she would NOT be performing her poem at the open mic night.
I was silent, thinking she might well have a pretty incredible poem. I gently poked at the edge of the idea of reconsidering, but she was adamant that she would NOT read (well, ideally perform) her poem at the open mic night.
She worked on her poem.
I held my tongue.
She worked on her poem more, and came to me -- wanting some help with a statistic.
I held my tongue, for I knew if I pushed her, she might well acquiesce and do it for all the wrong reasons. I did NOT want that.
As the weeks passed, I started noticing that Susan was talking about the poetry project, about her friends' poems -- about which friends she had invited to read her poem...and I could tell, she was starting to get excited about her poem.
Then, on Monday night, Susan asked me to read it with her.
I was blown away -- it was incredible.
I remembered her 11-year old self as I gazed at the strong, steady and quietly confident teenager she has become.
I made a few suggestions about the order of her stanzas and suggested she add a few details that those who hadn't lived through the experience with her might find helpful...
And then I couldn't help myself.
I looked at her and said steadily, "You need to read this."
(and I knew she knew I meant at the open mic night...)
I wasn't going to push her, but I wanted her to know -- her enrollment in PRROTECT spanned much of her middle-school experience. She missed more school than most, and I was pretty sure that many of her classmates had no idea what her life had been like -- and why she put herself through what she did.
I wanted Susan to read her poem for herself, for her classmates, and for everyone living with food allergies.
She looked back and me and said "I am going to read it. I need to read it."
We smiled at each other -- and I knew Susan would read it, not perform it, for that's not her style. But I also knew that Susan's story would be impactful...
She isn't a big, loud, commanding presence on the stage, but with the same quiet certainty she approached every challenge of the clinical trial, she shared her poem with her classmates. At first, there was some noise, but as she went on, the room grew still, silent -- every one of those students listening to her talk about her experience. And then, when she grew overwhelmed, teary, they snapped -- what they have been taught to do to offer those who are performing and in need of support.
I left the event proud of Susan, but prouder of the community she is fortunate enough to call her middle school. Class of 2016 Huskies, you rocked it last night!
But then, as we were talking about the poetry slam, I remembered something.
I remembered that last year, a boy in our community did something pretty incredible at the poetry slam.
I remembered that, with the support of his classmates, he shared what it was like to realize that he was homosexual. I remembered watching the YouTube video of his poetry slam and marveling both at his bravery and honesty and at the heartfelt support his classmates, his peers, his audience, offered him.
I remembered thinking -- a year ago -- that I wanted to attend Susan's mandatory eighth grade poetry slam.
Susan shared the details -- ALL students were required to work with a visiting poet/teacher to develop a meaningful poetry slam during an intensive three-week poetry unit. ALL students were required to read (well, ideally, perform) their poem either in their own English classroom or at the mandatory open mic night. Susan had already decided -- she was writing about the clinical trial, but she would NOT be performing her poem at the open mic night.
I was silent, thinking she might well have a pretty incredible poem. I gently poked at the edge of the idea of reconsidering, but she was adamant that she would NOT read (well, ideally perform) her poem at the open mic night.
She worked on her poem.
I held my tongue.
She worked on her poem more, and came to me -- wanting some help with a statistic.
I held my tongue, for I knew if I pushed her, she might well acquiesce and do it for all the wrong reasons. I did NOT want that.
As the weeks passed, I started noticing that Susan was talking about the poetry project, about her friends' poems -- about which friends she had invited to read her poem...and I could tell, she was starting to get excited about her poem.
Then, on Monday night, Susan asked me to read it with her.
I was blown away -- it was incredible.
I remembered her 11-year old self as I gazed at the strong, steady and quietly confident teenager she has become.
I made a few suggestions about the order of her stanzas and suggested she add a few details that those who hadn't lived through the experience with her might find helpful...
And then I couldn't help myself.
I looked at her and said steadily, "You need to read this."
(and I knew she knew I meant at the open mic night...)
I wasn't going to push her, but I wanted her to know -- her enrollment in PRROTECT spanned much of her middle-school experience. She missed more school than most, and I was pretty sure that many of her classmates had no idea what her life had been like -- and why she put herself through what she did.
I wanted Susan to read her poem for herself, for her classmates, and for everyone living with food allergies.
She looked back and me and said "I am going to read it. I need to read it."
We smiled at each other -- and I knew Susan would read it, not perform it, for that's not her style. But I also knew that Susan's story would be impactful...
She isn't a big, loud, commanding presence on the stage, but with the same quiet certainty she approached every challenge of the clinical trial, she shared her poem with her classmates. At first, there was some noise, but as she went on, the room grew still, silent -- every one of those students listening to her talk about her experience. And then, when she grew overwhelmed, teary, they snapped -- what they have been taught to do to offer those who are performing and in need of support.
I left the event proud of Susan, but prouder of the community she is fortunate enough to call her middle school. Class of 2016 Huskies, you rocked it last night!
Monday, February 1, 2016
To Eat A LOT of Peanut (24 Peanut Challenge)
For weeks, I have been thinking about what I would write tonight.
And now, I find myself overwhelmed by the sheer magnitude of where we have been, where we are, and where we...just might be going.
For Susan -- and our family and friends who have taken this incredible journey with us -- it hasn't been about travel, but about Susan holding on to the courage to eat something she knew could kill her...day in, day out...even after experiencing anaphylaxis -- all while dreaming of...and believing in a better, safer, freer life.
Susan's determination to see the clinical trial through despite exceptional difficulties and her desire to seek additional treatment while in the 5-year follow-up study goes beyond the definition of brave. Susan's determination goes beyond the definition of determined, or committed...and it has changed her life.
...and I have no words for how thankful I am that Susan's unwavering commitment to eating peanut(s) has resulted in her tolerating a food that once controlled and defined her -- and our -- lives.
Tomorrow, Susan will eat 24 peanuts -- in one sitting (spaced, but still, all in one sitting, in about 30 minutes).
We have come SO FAR...
So far that I cannot even begin to think how to encapsulate Susan's journey...
On May 31, 2014, Susan took her first home dose of peanut -- 15 mg of peanut flour, or 6% of a peanut. While she did not experience anaphylaxis to this microscopic dose of peanut, she barely tolerated it. From that day forward, and for many weeks thereafter, Susan's torso was covered in a fine rash. She was constantly nauseas, exhausted and irritable. (Really, who wouldn't be under such circumstances.)
Over the course of nearly two years, Susan has slowly but surely convinced her body to tolerate ever increasing amounts of peanut. Breakthrough, seemingly random anaphylactic reactions puzzled us...and made us pause and reflect on the seriousness of Susan's quest. While anaphylaxis gave us pause, it also taught important lessons.
In August of 2015, Susan was cleared to eat foods that might be cross-contaminated with peanut. At the time, her daily peanut dose was 4 1/2 peanuts. We celebrated by going to the Oberweis Ice Cream and Dairy Store across from her allergist's office. The next day, despite the fact that a single orange M & M once nearly killed her, she celebrated turning thirteen by trying not one, not two, not three, not four, not five, but SIX different kinds of M & Ms.
The freedom has been...incredible. We have flown, Susan has eaten off of a food truck (a samosa, which she loved!), and at Indian and Thai restaurants. Just today I sent her into the city with a parent I don't know for the afternoon...and she ate at "some Mexican restaurant with great tacos." (I don't know the name of the restaurant...and incredibly, I don't care.) There are no words for the way freedom to live in the moment has changed Susan's life, has freed us as a family...has given back my life as a parent. Just tonight I told Susan she could have "whatever she wanted" off the Sweets Table at her siblings' elementary school skating party (thanks to us, their school have a "No Nuts" policy).
This morning, and last night, and at least once every day since December 15, 2015, Susan has eaten TWELVE peanuts a day...(mostly) without issue.
Tomorrow morning, Susan will eat 24 peanuts...in one sitting.
I believe she will tolerate the 24 peanuts, but in the back of my mind...I do wonder.
(How could I not?)
But even though I wonder, and I suspect I won't sleep well...and I suspect I won't really want to eat breakfast...we will do this -- for this is part of getting from where we were to where we are now...
Susan has been VERY CLEAR that if she passes this 24-peanut challenge, she will go to "full dietary inclusion" of peanut ("maintenance" of a smaller daily dose is also an option, but she's not interested in that). While Susan is tired of the plain old peanut thing, if she had to, she would do maintenance dosing of 8 or 10 or however many peanuts were dictated...forevermore...but...she wants more.
As for me...I have a few things planned...for tomorrow (Susan has some incredible friends)...and for beyond tomorrow. While I believe in the promise -- and the science -- of OIT, I also know Susan's journey has been harder than most. There is no guarantee tomorrow will go well...and while I hope it does, even if it doesn't, Susan's journey has been a success...
And no matter what happens, it is not over, for Susan is determined to completely reclaim her life...and thanks to PRROTECT and OIT, I believe that some day...she will.
And now, I find myself overwhelmed by the sheer magnitude of where we have been, where we are, and where we...just might be going.
For Susan -- and our family and friends who have taken this incredible journey with us -- it hasn't been about travel, but about Susan holding on to the courage to eat something she knew could kill her...day in, day out...even after experiencing anaphylaxis -- all while dreaming of...and believing in a better, safer, freer life.
Susan's determination to see the clinical trial through despite exceptional difficulties and her desire to seek additional treatment while in the 5-year follow-up study goes beyond the definition of brave. Susan's determination goes beyond the definition of determined, or committed...and it has changed her life.
...and I have no words for how thankful I am that Susan's unwavering commitment to eating peanut(s) has resulted in her tolerating a food that once controlled and defined her -- and our -- lives.
Tomorrow, Susan will eat 24 peanuts -- in one sitting (spaced, but still, all in one sitting, in about 30 minutes).
We have come SO FAR...
So far that I cannot even begin to think how to encapsulate Susan's journey...
Over the course of nearly two years, Susan has slowly but surely convinced her body to tolerate ever increasing amounts of peanut. Breakthrough, seemingly random anaphylactic reactions puzzled us...and made us pause and reflect on the seriousness of Susan's quest. While anaphylaxis gave us pause, it also taught important lessons.
In August of 2015, Susan was cleared to eat foods that might be cross-contaminated with peanut. At the time, her daily peanut dose was 4 1/2 peanuts. We celebrated by going to the Oberweis Ice Cream and Dairy Store across from her allergist's office. The next day, despite the fact that a single orange M & M once nearly killed her, she celebrated turning thirteen by trying not one, not two, not three, not four, not five, but SIX different kinds of M & Ms.
This morning, and last night, and at least once every day since December 15, 2015, Susan has eaten TWELVE peanuts a day...(mostly) without issue.
Tomorrow morning, Susan will eat 24 peanuts...in one sitting.
I believe she will tolerate the 24 peanuts, but in the back of my mind...I do wonder.
(How could I not?)
But even though I wonder, and I suspect I won't sleep well...and I suspect I won't really want to eat breakfast...we will do this -- for this is part of getting from where we were to where we are now...
Susan has been VERY CLEAR that if she passes this 24-peanut challenge, she will go to "full dietary inclusion" of peanut ("maintenance" of a smaller daily dose is also an option, but she's not interested in that). While Susan is tired of the plain old peanut thing, if she had to, she would do maintenance dosing of 8 or 10 or however many peanuts were dictated...forevermore...but...she wants more.
As for me...I have a few things planned...for tomorrow (Susan has some incredible friends)...and for beyond tomorrow. While I believe in the promise -- and the science -- of OIT, I also know Susan's journey has been harder than most. There is no guarantee tomorrow will go well...and while I hope it does, even if it doesn't, Susan's journey has been a success...
And no matter what happens, it is not over, for Susan is determined to completely reclaim her life...and thanks to PRROTECT and OIT, I believe that some day...she will.
Thursday, September 24, 2015
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.
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.
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.
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.
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.
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."
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.
NO ONE plans to have an anaphylactic reaction, ever.
And that is why we must teach our children to always be prepared.
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.
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.
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