"Self-Injecting Epinephrine" -- Susan's "A - Z Essay"

Susan had an interesting assignment over the Memorial Day weekend for her English Language Arts class.  The assignment was to write an "A-Z Essay" about a new experience or a "first."  The concept of an "A-Z Essay" is new to me -- and harder than it might sound.  In order to fulfill the requirements of this assignment, the essay must be exactly 26 sentences long, and each sentence must start with a different letter of the alphabet -- in alphabetical order.  Susan knew immediately that she wanted to write about self-injecting epinephrine, and I could tell by her excitement as she was working on her assignment (she came to find me in the kitchen to tell me about it part-way through), that she knew it was going to be good.  And...she was right.

With her permission, I share it here.

Self - Injecting  Epinephrine

(Food) Allergies are one of the worst things in the world-- food restrictions, places you can’t go, and worst of all…allergic reactions.  Bad, bad reactions occur every time you accidentally eat your allergen;  I have had many such reactions.  Clinical trials are being used to try to find a cure and since I am in one where I eat peanut (my allergen), I have had even more reactions than most people.

 

“Daaad,” my sister yelled: “Susan’s face is really, really red.”  Everyone in my family knew what was happening, since we had seen these symptoms before.  

“Food allergies are terrible,” I said.  

“Go get Mom,” said my Dad.  Hurrying up the steep stairs to the office where my mom was working was hard especially since I was starting to have a hard time breathing.  I took out my EpiPen without even discussing who would administer it because I wanted to be the one to do it.  

Just imagine jabbing yourself in the thigh with a shot;  it is very hard to do. Kindly, my dad made my worried little sister go to her room to make it a little less chaotic.  Lightly, I tapped the EpiPen on my thigh;  I was sort of “practicing” while I was steadying myself.

Mom said, “You have to do it or I will,” and then she started to count.  No way was I going to go past ten.  Once my mom got to six I was mentally ready and steady.  “Pop!” the EpiPen made a sound as I jabbed myself, but since it is so fast I’m not sure exactly what it sounded like.  Quickly I had to push back against the rebound of the EpiPen since I have to hold it in me for at least ten seconds.  Racing-- was what my heart was doing.  Slowly, I calmed down.  Tears…of relief poured out of my eyes.  Usually within about five minutes of administering epinephrine I start to feel more normal.  Very shortly after I used the EpiPen I felt much better.  

Whoa…I felt better but also shaky and tired.  X-tremely happy I was that the scary moment of wondering if the epinephrine would work was over.
            You have no idea how epinephrine works-- it makes you so tired.  Zzzzzzz...I slept for pretty much the rest of the day.

Sobering Reminder

There is not a day that goes by that I do not think about food allergies.  While I do not (thankfully) live in a constant state of anxiety, I am well aware of the power of food allergies -- the fact that a single bite of the wrong thing can lead to anaphylaxis, or even death.  For me, Susan's daily peanut dose is always a time for reflection on the power of food allergies.

Yesterday, there was the terribly sad news about another food allergy death.  An 18-year old boy named Dylan Hill, with a known nut allergy, died an hour after eating at an Indian restaurant in South Yorkshire.  It is believed that he suffered an anaphylactic reaction after being exposed to nuts.  He did not have his epinephrine with him.

Every single time I hear about a food allergy death, I go still.  I think about the life lost too early, unnecessarily, and about those left behind.  

Every single time I hear about a food allergy death, I wonder what could have been done to prevent it...

Names of children who's lives have been claimed by food allergies -- Chandler Swink, Natalie Giorgi, Derek Landon Wood, Joseph DiNicola, Scott Johnson, Giovanni Cipriano, Katelyn Carlson -- live within me.  Sadly, the list is staggeringly long...and each story resonates with me in it's own unique way...underscoring my fears about Halloween, not having epinephrine, school borne exposures and...eventually, college.  With every story comes new risks to address, new fears to integrate into our daily lives.

I am ever so thankful to the parents of children who -- in the face of what can only be a staggering loss -- speak out, educating others about the importance of prompt administration of epinephrine and advocating for awareness, understanding, education, better food labeling laws, research funding and more.  

Every single time I hear about a food allergy death, I think about how far we have come in education, advocacy and research...and am sobered by how much we have left to do.  


Ever since Susan's last anaphylactic reaction to her daily peanut dose, we have been meticulous in every step of her daily dose.  While at this point I do not believe Susan's adverse reactions to her "maintenance" doses (first to a Snicker's Bar and then to 8 and 1/2 Peanut M & M's) were because of something within our control, we are doing absolutely everything in our power to ensure that WE do not create a variable that might lead to an adverse reaction...to anaphylaxis.


With news of Dylan Hill's death fresh in my mind from yesterday, I prepared the medications Susan takes before her peanut dose -- Zyrtec, Famotidine and Omeprazole -- all geared to support her body's effort to tolerate the dose -- and then her dose -- 1 single full-sized Reese's Peanut Butter Cup -- and a breakfast of scrambled eggs, muffins, mangos and milk (all foods she eats regularly) with care.  I presented breakfast-in-bed to Susan and a friend from soccer, who slept over...and then went about my day.

Susan and her friend enjoyed breakfast-in-bed and lounged around after, playing games on their iPads, talking, and relaxing.  It was a rare day with nothing more strenuous on the agenda than a shower...and Susan and her friend were both looking forward to the luxury of having nothing either of them had to do all day.

An hour and 45 minutes after her dose, Susan's sister Meg sounded the alarm -- Susan's face was red -- flushed.  I wasn't home, although my husband was.  While Susan assured us she felt fine, they quickly took pictures and sent them to me.  And then they informed me that Susan's chest, torso, back and stomach were also covered in hives.  More pictures.  

I looked at the pictures while talking to Susan.
Susan insisted she felt fine.
While I was listening to her words, I was listening more intently to how she sounded -- wondering if I heard an ever-so-slight wheeze...or if she was just the tiniest bit breathless...

As Susan insisted she was fine...
And I listened for what she herself might yet even be able to articulate in her voice...
One thing was clear.
I heard a note of panic in her voice...

(I am sure she was having the same possibilities unfurl in her mind...epinephrine...emergency call to doctor on-call for the clinical trial, possibly a trip to the emergency room, more epinephrine...and worst of all...the future of the clinical trial?  The very future of eating peanut.)

As I assured Susan that if she felt fine, it was likely to be nothing more than the skin changes we had identified, I tried to tell myself the same thing.
I knew it was important to tamp down that panic.
No exercise for two-hours post dose.
A racing, panicky heart would not, could not be good.

I reminded myself that we were nearly 2-hours post dose...knowing full well that that hadn't ever stopped Susan from having an anaphylactic reaction before.


As I debated whether or not to go home (recognizing that if her skin changes were the beginning of an anaphylactic reaction, I would never get there in time...knowing, also, that as much as I wanted to be the one there, Susan and her father...my husband...could -- would have to -- handle this), I...
...wondered about the future.  
...thought about the risk (low, calculated, for an express purpose, with the belief that something better lies in front of her).
...took a minute to respect peanut, and the power it has to take my daughter from me.


I realized something I think I have known for a long time now, but have never really articulated.  
This (eating peanut thing) is always going to be hard.
This eating peanut poses a (significant) risk.
But hopefully, this "hard" is better than the other ways Susan's life has been "hard."
And hopefully, this daily "risk" is less than other, unknown, lurking, invisible "risks."


And I realized that while Susan has come tremendously far, what happened today -- a reaction, while (eversothankfully) mild -- underscores the need for more research, more clinical trials...and more funding...for the risk is still mind-bogglingly great.

I cannot help but feel that there was a reason Susan had a reaction to her peanut dose on the morning of the eve of her read-a-thon.   Her reaction -- as Susan and more than ten other readers are poised to raise awareness about food allergies by "reading for a reason" -- reminds us of the importance of raising awareness about the impact of food allergies and the importance of funding for additional food allergy research.

If you have ever cheered Susan on, celebrated her success or shed a tear while reading about her clinical trial journey -- if you are the parent of a child living with food allergies who hopes for a better (safer, different, easier) future or someone living with food allergies yourself...this is an incredible opportunity to thank our brave Susan for all that she has done in an effort to move food allergy treatment research forward.  

Please consider donating to Susan's read-a-thon today.

Susan's Read-a-Thon (to Raise Awareness and Money for Research)

In the past eighteen months, Susan has had five anaphylactic reactions to peanut.  I have witnessed four of her reactions, and have supported her as she has self-administered epinephrine during three of them.  Once, I was out of the country. 

Two years ago, I would have told anyone who asked that I “got” the severity of Susan’s food allergies.  

Two years ago, I would have openly shared the ways in which Susan’s life has been limited (despite our best efforts) because of her airborne and contact anaphylaxis to peanut protein.  

Two years ago, I knew Susan was on a short list of potential subjects for the PRROTECT (Peanut Reactivity Reduced by Oral Tolerance in an Anti-IgE Clinical Trial) study.  

Two years ago, I believed that through participation in the clinical trial, Susan’s life would be dramatically changed for the better.  

Two years ago, I would have said that my greatest hope was that Susan would be freer as the result of the clinical trial.

Now – eighteen months into the PRROTECT study at Ann & Robert H. Lurie Children’s Hospital in Chicago, I have a sobering clarity and understanding of the severity of Susan’s food allergies that I wish I did not have. 

It has become clear in the last year that Susan’s food allergies do not respond as anticipated.  It has become abundantly clear in the past year that while great strides have been made toward viable treatments in food allergy research – there is still immeasurable work to be done – research, studies, clinical trials…

While Susan is now eating – and tolerating – 2000 mg of peanut protein a day, she is a clinical trial “failure” in that she did not reach the desired tolerance of 4000 mg of peanut a day.  Susan does not fit the standard treatment protocol as outlined by the PRROTECT study.  And while I wish it were not so, I have met countless parents over the last year whose children are like Susan – whose food allergies, which set them apart already, are several standard deviations outside the food allergy “norm,” thereby setting them apart even further.

Some people have suggested to me that people like Susan might not ever achieve tolerance -- and that maybe Susan should stop eating peanut...that maybe we should wait for some other form of treatment to become available.  I disagree, and feel strongly that treatment for people like Susan is even more important than treatment for people who have more “typical” (if there even is such a thing) food allergies. 

Dr. Bajowala, a private practitioner who offers oral immunotherapy (OIT) to her patients recently participated in an interview regarding her work.  In answer to a question regarding criterion for selecting OIT candidates based on blood test results and severity of the allergy, she said, “The only criteria for OIT are presence of an IgE-mediated food allergy and commitment to adhering to the protocol…High food-specific IgE is not a deterrent, but may be a criterion for beginning with sublingual lead-in therapy prior to beginning OIT.  There is no such thing as being ‘too allergic.’  In fact, the patients at highest risk of anaphylaxis are the ones who have the most to gain from desensitization.”

There.

As scary and unpredictable as eating peanut has been…seeking treatment IS as important as we have always believed it to be.

But there is so much work yet to be done…

And this weekend, Susan wants to do her part in raising awareness and funds for food allergy research.

When Susan, who loves to read, was seven years old – in second grade – she wondered how many minutes she might be able to read in a day.  Susan’s Read-a-Thon to raise money for food allergy research [[(first for the Food Allergy Initiative (FAI) and now for Food Allergy Research & Education (FARE)] was born out of this wonder…and over the years, she and other children living with food allergies have raised thousands of dollars for food allergy research.

Last year, Susan was at a particularly difficult time in the PRROTECT trial.  She was trying to eat peanut, but not tolerating it very well.  She was covered in a fine, hivey rash, nauseous, and exhausted.  Despite valliant efforts early in the day, she eventually essentially abandoned her read-a-thon mid-day, disappointed to admit that she really did not feel well enough even to read – an activity that she loves.

This year, Susan is hoping that those who have followed her journey…those who have read Eating Peanut…

   those who are caring for children with food allergies…

   those who are living with food allergies themselves…

   those who live for the day when there will be viable treatment options for all…

will help her turn her read-a-thon into something…bigger.

Please support Susan – spread the word about Susan's read-a-thon, pledge for Susan or one of the other readers, or become a reader (Susan is hoping to have a total of 20 readers!). Becoming a reader is easy – just commit to reading either as much as possible -- or a certain amount (I get that some people don’t actually want to read ALL DAY LONG) on Monday, May 25, 2015.  FARE makes it easy for readers to join – anyone who wants to read will have an individual sponsorship page (get it by clicking JOIN TEAM).  Readers just need to write something about why the read-a-thon is important and send it out to friends, family and other potential sponsors.  Sponsors pledge and make their donation using links on the reader’s individual sponsorship page

Susan: "I'm Not Scared"

While we were at our second-to-last clinical trial visit, Susan and I talked with the doctor about post-clinical trial care plans and treatment options.  I raised the topic early knowing that since Susan never achieved tolerance of 4000 mg of peanut protein, there is nothing in the protocol about what should happen to Susan upon completion of the clinical trial  (Actually, the formal language makes me cringe, as according to the language, Susan "failed" to achieve tolerance of 4000 mg of peanut protein -- and, of course, that is accurate, but I still cannot use the word failed in conjunction with any part of Susan's participation in the clinical trial.)

I also remember -- early on -- back when we were filled with optimism...before I started to believe Susan had been one of two "controls" at our study site and therefore had not received Xolair injections during the build-up phase of the clinical trial -- that if Susan did not achieve tolerance of 4000 mg of peanut protein, she would not be allowed to continue taking a daily peanut "dose" upon completion of the clinical trial.

You know how you hear something but it is so far from your reality that you don't pause to let it sink in...to consider the possible reality?  Well -- that's what that moment was like.  I remember it (I do).  But, in recent months I have wished to have that conversation back -- to ask more questions...to demand a better (read:  real) plan -- to advocate (in advance, and on behalf of all children in the clinical trial).  I wish I could have that conversation back with the knowledge I have now.


During the course of our discussion during Susan's second-to-last clinical trial visit, it became apparent to me that the doctor had some concerns about Susan continuing on a home dose of 2000 mg of peanut protein after she completes the clinical trial.  (I wasn't at all shocked by this, as it has been a fear of mine since Susan's most recent reaction...but hearing her concern expressed did make me...pause.)  And, as Susan had expressed some interest in trying to increase her daily peanut dose (at some point), it became very clear that we would need to find a meeting of the minds.

[We're not there yet -- not at all...but, I am determined to find a middle ground, a safe meeting place...a happy medium.  I am determined that if it is important to Susan that she keep eating peanut, we find a way to do that safely...and if that means we will have to agree not to press forward toward higher doses (at least not for now), I can live with that, and I will work to help Susan accept the reality of where we are -- for now.]

I need to read, research and talk to people -- medical professionals, parents who have walked this road in front of us...those who are walking it with us...and anyone else who might help us chart a road through what is truly unchartered territory...while the doctors at the clinical trial do the same.  I am thankful beyond words for the doctors who have seen us through the clinical trial -- one of them has always been available to us, to guide us, to assure us and to reassure us...and yet I understand there there are limits to what they can offer us.

There are no clear answers -- Susan's experience in the clinical trial has proven that beyond a shadow of a doubt.

As a dear friend once said...you would rather be a horse than a zebra (when it comes to medical issues).  Unfortunately, if one thing has become clear in the past year, it is that Susan is a zebra when it comes to her food allergies -- rare, unpredictable, and without a discernible pattern.  In unchartered territory, she is an outlier.

While I have often thought over the past year -- and really, long before this, too -- that I would welcome a plain-old, more "typical" (read:  simpler) food allergy (not airborne or contact)...if that were Susan's lot, she would not be in the clinical trial, for we never would have sought such "treatment" options for her if she had a more "typical" food allergy.  And if that were the case...we wouldn't -- she wouldn't -- know her own strength.


The morning of Susan's second-to-last clinical trial appointment, she and I talked about what kind of a relationship she might have with peanut in the future while driving to Ann & Robert H. Lurie Children's Hospital.  By the time we arrived, I knew exactly where her head was on the subject of eating peanut (or continuing to) eat peanut.  She was very clear.  Not only did she not want to stop eating peanut, she also wanted to try to eat more peanut.  

While there is a part of me that sees the logic in this...that actually believes that if we can somehow get from where Susan is now to whatever "more peanut" might be...she would actually be safer...for there is (some) research to suggest that daily tolerance of a higher volume of peanut protein increases safety (thereby decreasing risk of a life-threatening anaphylactic reaction as the result of an accidental exposure)...but, only, of course...if such a dose is safely tolerated.  

And, a little voice says in the back of my mind -- continuing to eat peanut only makes sense if whatever Susan's daily dose is doesn't push her so close to whatever the edge of what her body can tolerate is that a tiny speck -- airborne, contact or in a cross-contaminated food might push her over, into an anaphylactic reaction.

Conundrum.
Too many uncertainties.


Because Susan had such a clear vision for what she wanted her future relationship with peanut to look like, I felt it was important for her to be a part of the conversation with the doctor.  Early on, she listened, multi-tasking (read:  gaming on her iPhone) while the doctor and I talked.  After several failed attempts at getting her undivided attention and hearing her voice, I finally took her phone (kindly)...stressing how important it was for her to have a voice in what happens next.

I got it.
As much as she is 12, and wants to have a clear voice in what happens next, she doesn't want to have to advocate for it.
She's only 12.
She wants me to figure out how to make it all come together.

That's OK -- she's doing the hard, scary work, after all.
I am going to try to manage the planning of it, gathering information, researching options, synthesizing...and ultimately, going back to her so she can weigh in.


As badly as I felt when I took Susan's phone, I was beyond glad that I had, for Susan engaged in what turned out to be a very interesting conversation with the doctor.  (Susan and I talked in the car on the way home, and it became clear to me that she didn't "hear" the doctor's unspoken, between-the-lines concern about continuing with a daily dose of 2000 mg of peanut protein...but even if she had, it was clear to me that she still wants to press on -- even if "on" just means staying at a dose of 2000 mg of peanut protein for the foreseeable future).

As we were discussing options (and let me be very clear -- no decisions have been made about what Susan's treatment will look like once she is discharged from the clinical trial), the doctor asked Susan if she is ever scared about taking her daily dose of peanut.

Susan responded quietly, but clearly and firmly -- "No."

I have to say -- I was surprised -- how could she not be (at least a little) scared about taking her daily dose?
I am pretty sure the doctor was surprised, too...because she asked Susan to explain why she wasn't scared about taking her daily dose of peanut.

Susan didn't hesitate.
She explained -- very clearly, logically -- rationally -- that for every time she has had a "bad" (read:  anaphylactic, life-threatening) reaction to her daily peanut dose, she has had many days where she has NOT had a "bad" reaction.

Oh.
Right.
So simple and clear 
   (sort of).

While it is hard to argue with logic like that, there was (and still is) a part of me that wonders how Susan could possibly view this so simplistically.

And yet, maybe she is right to look at it in that way.
One of the things I really appreciate about everyone involved in the clinical trial is that when they do not know the answer, or have a plan, they have consistently been honest about that.

I understand -- we are on the cutting edge here...
Maybe Susan is right not to over-complicate matters.


Later, Susan admitted to me that she was scared -- last May and June, when she was taking a daily peanut dose and was having very delayed reactions.  This was before she was moved to the open-label Xolair injection phase of the clinical trial, and she recalls -- even now -- how unwell she felt during that time.  

Somehow, it was reassuring to me that Susan was able to make a distinction between then and now.
While it brought tears to my eyes when Susan admitted she was scared last May and June (I knew it then, but, somehow it was harder hearing her say it), it was also helpful.

It affirmed for me what Susan said.
She IS NOT scared (at least not right now).

Susan's desire to continue eating peanut comes with hard-earned wisdom about how quickly life-threatening anaphylaxis can set in, changing the landscape of the day, the week...her future...

And yet, even knowing that, Susan wants to continue eating peanut.
The deadly beast she knows and lives must, at least for Susan, be scarier than the deadly beast that lurks.

We're going to keep living.

Susan has made it clear beyond question that she does not want to live in a bubble.

Susan does not want her food allergies to define or limit her.
She is willing to keep eating her daily 2000 mg dose of peanut -- even though it seems more likely than not that at some point she will experience an anaphylactic reaction to her dose.

I find myself thinking that at some point (once Susan has been discharged from the clinical trial) -- we might have to purposefully expose her to peanut -- in the air, on her skin...on my breath.  Maybe we'll go to one of those restaurants with crushed peanut shells on the floor (allergist permitting, of course).  The very idea makes me queasy, and a bit shaky...but if the clinical trial has been all about pushing Susan's tolerance of peanut in a (semi) controlled environment, this idea is similar...

We will walk in...to whatever the peanut-laden experience is with our eyes wide open...

I'm sure I'll be prepared for the worst, while hoping for...something better.

Susan is anticipating the day when she can walk into an ice cream shop and pick something off the menu (as long as it does not actually contain peanuts or tree nuts, I am going to let her have anything she wants!) or a bakery and pick something that looks yummy -- just because.

The list of just local places Susan has never entered...let alone never eaten from is mind-boggling:
Dairy Queen
Baskin Robbins
Dunkin' Donuts
Frost
Oberweis Dairy
Bent Fork
Baker Brothers
Jolly Good Fellows
Einstein Brothers

Those are just the few that came to mind quickly.  The list goes on and on.

Fifteen months into the clinical trial, with five anaphylactic reactions behind her, Susan is decidedly not scared of peanut, and while the future is clouded with uncertainty, I am tremendously thankful that the clinical trial has resulted in us getting to know the deadly beast.  

Now, while peanut still has the power to induce life-threatening anaphylaxis in Susan, she is armed with the knowledge and experience she needs to take care of herself.

Incredible.