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.

Turning 13 (A Moral Musing)

Thirteen is a funny age.
Mature, grown, and yet...not really...for think how much growing and maturing most 13-year olds have left to do.


I still remember being struck by the fact that Susan was required to sign an "assent" agreeing to her continued participation in PRROTECT when she turned twelve...

And now that Susan is thirteen, I cannot access her medical records without her assent (I was shocked when our pediatrician's office e-mailed me the form she had to complete in order for us to have continued access to her records).  What happened to turning 18?  21?
(What does this early coming of age mean?)


While we are not Jewish, we live in a community with a significant Jewish population, which means that many of Susan's friends became bat or bar mitzvah over the last year.  Susan's younger brother has a thirst for knowledge, and I often find myself googling things so that I can more fully answer his questions.

Last year, at one point, I found myself reading about what it "truly meant" to become a bat or bar mitzvah.  I was struck by this:  "a bar mitzvah is not a full-fledged adult yet, but Jewish tradition recognizes this age as the point when a child can differentiate between right and wrong and hence can be held accountable for his actions."

The article went on to explain that in most states, children can legally begin working part-time at the age of fourteen (who knew?!) and that in many states, children under the age of 18 can marry, as long as they have parental consent.  The article also noted that children in their teens can be treated as adults in criminal proceedings if the circumstances of the crime warrant such treatment (of this, sadly, as a forensic social worker, I was well aware).

All of this confirmed what I already thought -- that thirteen is a funny age...a sort of in-between...old enough to be responsible and mature, at an age where good decision-making is expected...and yet young enough to still require parental oversight and supervision.


We saw Susan's new allergist, Dr. Bajowala, one day before Susan's thirteenth birthday (for an OIT peanut updose appointment).  During Susan's post-dosing observation period, Dr. Bajowala began exploring what Susan's friends know about her food allergies.  I was initially surprised by Dr. Bajowala's interest, and then I realized where she was going, why she was asking.

I think Susan was a bit surprised by Dr. Bajowala's inquiry, too, for she initially responded without really engaging, saying something along the lines of (simply) "my friends know I have food allergies."  

Despite Susan's somewhat disinterested response, Dr. Bajowala persisted.  As the conversation unfolded, it became clear that Dr. Bajowala wanted to know if Susan's friends would be able to recognize an anaphylactic reaction, if Susan's friends would know what to do if she became unable to ask them for help.

As I listened carefully to the discussion between Susan and Dr. Bajowala, I realized how very right Dr. Bajowala was in pressing Susan to think about these issues -- for Susan is moving into one of the most difficult, risky periods of her life with food allergies -- adolescence.  (While I believe -- and hope -- that Susan's grasp on the severity of her food allergies is such that she will NEVER engage in food-related risky behaviors, and while I believe -- and hope -- that at this point Susan understands the potentially devastating consequences of not have epinephrine when needed, I also understand that -- statistically speaking, at least -- the teenage years are fraught with increased danger for those living with food allergies.  While I also believe -- and hope -- that Susan's progress in OIT will provide her with a substantial layer of protection from any exposure to peanut, I am keenly aware that we are not done yet...and I believe Susan understands this...)

As Susan and Dr. Bajowala talked, my thoughts wandered.

Susan needs friends who understand her food allergies.

Susan needs friends who will respect her dietary restrictions and never, not ever push her to eat something that even might be unsafe.
Susan needs friends who know the symptoms of anaphylaxis (even, especially) the sneaky ones.
Susan needs friends who know where her epinephrine is.
Susan needs friends who will not ever hesitate to administer epinephrine.

Fortunately, Susan has a great group of friends, and I have been consistently impressed with the ways in which they have supported her -- especially during the confusing middle school years.  Before OIT, Susan rarely ate out, ever, anywhere.  Since OIT, and clearance to begin eating at previously unsafe places, Susan has enjoyed countless outings with friends who seem to have just been waiting for the day they can hang out and enjoy a treat together.  Thus far, I've been along for every single outing, but the day will come when I won't be there...(and that's okay -- I really don't need all that ice cream, anyhow!)

Realizing the tremendous importance of what Dr. Bajowala was addressing with Susan, I joined in the discussion to help Susan formulate a plan...although once she understood what Dr. Bajowala was suggesting, she had some very good ideas of her own.

Susan's birthday party was scheduled for the following day, and recognizing the importance of what she and Dr. Bajowala had discussed, Susan decided she wanted to show her friends How To Stay Alive (the epinephrine usage PSA she made over the summer), and then she wanted her friends to practice administering epinephrine by injecting expired EpiPens into an orange.  (That will make an impression, I thought, as we talked about her plan.  Memorable party, for sure.)

As I thought more about it, I wondered how her friends' parents would feel about this part of the birthday party (I also wondered how receptive her friends would be, too), and then I decided that it was important enough to do it that I was going to simply send a quick e-mail telling her friends' parents what we would be doing (along with a link to the PSA) and...proceed.  As scary as it can be to think about (or witness --even after the fact) anaphylaxis, as a mother, I want all of Susan's friends to know what to do in the case of an anaphylactic reaction...and not just for Susan.  I want to be a part of building a community of young teenagers who know how to take care of each other.


It was incredible.
The room was silent for the 7 minute showing of How to Stay Alive.
No one moved.

And when the PSA was over, Susan's friends were eager to administer epinephrine to the orange.  One of Susan's first friends to take a turn injected the EpiPen into the orange quickly and confidently, but then pulled it out too quickly -- we could see medication dripping from the tip of the needle.  Susan was quick to reassure her friend that she had made the same mistake.  The friend asked to try again.  She wanted to get it right.  A younger friend with food allergies studied the orange very seriously before carefully and precisely injecting the EpiPen.  A friend whose youngest brother suffers from more food allergies than I can list swiftly administered the epinephrine, while yet another hesitated and then pulverized the orange.  We learned from each and every one of Susan's friends that day -- including the one who watched carefully but just wasn't quite ready to do it.  

Susan and her brother administered the two expired Auvi-Qs, and even after having used a real Auvi-Q, Susan still thinks she will go for the EpiPen first.  I don't care what she uses, as long as she is able to take care of herself.


I have thought a lot about that day, and I am increasingly glad Susan created an opportunity during her birthday party, when most of her close friends were with her, to do this.  

If we want to teach our children not to bully, not to tolerate racism or random acts of violence or other wrongs in the world, we should also be teaching our children how to take care of each other...how to recognize subtle bullying, how to really, truly see that which is happening around them...including signs of anaphylaxis.

If these young-adult-children-teens are "old enough" to be assigned homework that includes following international news (and they are), they are "old enough" to learn how to take care of each other.  As the mother of a child with life-threatening food allergies, I have a moral responsibility to impart important information regarding food allergies and anaphylaxis to these young-adult-children-teens.  We have to start at some point...and thirteen seems just as good of an age as any other...

For shouldn't I want these young-adult-children-teens to be able to recognize anaphylaxis in the same way we want them to recognize bullying or racism or a random act of violence???

For shouldn't I want these young-adult-children-teens to know what to do in the case of anaphylaxis much as I want them to know how to intervene swiftly, decisively and effectively in the face of bullying or racism or random violence???

Yes -- and now, a group of Susan's closest friends are one step closer to being able to truly, definitively, effectively intervene should they encounter anaphylaxis.  Knowledge is power.

A Single (Plain) Orange M & M

Until recently, the only M & M Susan had ever eaten nearly killed her.

She was thirteen months old, and it was Halloween day.

I had a large bowl of candy I was planning to give out – all chocolate, and my favorites – Reese’s Peanut Butter Cups (I cringe now), Twix, and M & Ms.  In advance of the festivities, I decided to let her try her first real chocolate (she'd had chocolate frosting, but never chocolate candy).  

I started with a single plain M & M.  
I still remember – it was orange.

Even as a toddler, Susan was always good about trying new things – but she wasn’t quite sure what to do with the slippery bright orange disk as she pushed it around on her highchair tray.  (Prior to the orange M & M, the only food Susan ever rejected was a lima bean – and I couldn’t blame her!)

I kept signing to Susan that she should eat the M & M, making "yummy" sounds and then eventually I popped a matching orange candy in my mouth.  Susan followed suit…but even once she had it in her mouth, she still wasn’t exactly sure what to do with it.  Thinking back, Susan probably wondered why I was encouraging her to eat something that looked more like a toy than food!

Gamely, she held the M & M in her mouth, drooling orange.  Eventually, as it melted, she moved it around in her mouth until the drool became an orangey-chocolate mix.  

And then, just as Susan started to look delighted -- a sugar-hitting-tastebuds kind of look -- she started coughing, and turned bright red.  As I fumbled to release Susan from the highchair -- thinking frantically "Heimlich -- get it out...turn her upside down...get it outgetitoutgetitout" food allergies were the furthest thing from my mind.

At some point during my struggle to free Susan from the highchair, the M & M landed on the floor -- a slimy, still-somewhat orange gob of melty chocolate.  I still remember seeing the M & M on the floor and distantly wondering how it could be that Susan was still...choking.  It all happened so fast, but I remember clearly that in the aftermath, I was struck by the incongruence of the M & M lying there on the floor while Susan coughing, gagging...choking.

I cannot recount what all I did or in what order, but I do know that I yelled frantically for help (even though I was home alone with Susan).   When I think back to that day, I am struck by what I now believe is knowledge that something was very wrong.  

What I do know is that eventually Susan, who was by then bright red, blotchy, and crying pitifully, managed to expel a large, thick phlegmy glob of...mucus.  

GROSS.
Disgusting.  
  (And...odd...for she hadn't been sick.  Where had all that thick, sticky mucus come from?)

Even then, before I knew anything about food allergies, something didn't seem right.  Even then, after the emergency seemed to have passed, Susan was still miserable.  

Shaking, I held her in my arms as she cried, sticking her hand into her mouth and writhing around.  
(Eventually, later, she had diarrhea that made her scream.)

I couldn't figure it out, but I didn't like it.
Something just didn't seem right.

I called our pediatrician. 

Susan is our first child, and while I wouldn't describe myself as an anxious parent, I am sure I called (our now former) pediatrician more than once about something that was...nothing.

I spoke to a nurse, who informed me that "a lot of kids are sick."
She agreed to ask the doctor to call me, who said essentially the same thing:
     There is a stomach virus making the rounds.
     Keep her in.
     No trick-or-treating -- she's so young, she'll never know she didn't go.

I remember trying to explain that really, Susan had not vomited...but I lacked the ability to articulate the horror of it clearly, and Susan's (now former) pediatrician was confident in his diagnosis.

Against a backdrop of reassurance that Susan had merely vomited, I asked the dreaded question that was just barely fully formed in my mind...
"Could she be allergic to chocolate?"

At the time, I could imagine no horror worse.
  Little did I know.

Our (now former) pediatrician assured me that food allergies were not very common, and stressed that chocolate allergies were "really very rare."  

As I thanked my (now former) pediatrician for calling, I was aware of the little voice in the back of my head -- this wasn't vomit.  
This didn't SEEM like a stomach bug.  
(Something wasn't right...)

As the years wore on, Susan became the queen of terrible random gagging, choking episodes that eventually led to vomiting, or at least to something our (now former) pediatrician called vomiting.  Our (now former) pediatrician assured me that I did not need to worry, citing a "weak gag reflux" and explaining that Susan would "grow out" of her "tendency to vomit" as she got older.


Looking back, I wish I could say I just knew Susan had food allergies, but the truth is that...I didn't.

While my momstinct told me something wasn't right, I simply did not have enough experience to know that I was likely witnessing anaphylactic reaction after anaphylactic reaction...and that we were...incredibly...dodging bullet after bullet.

Even now, it chills me when I think about how fortunate we are, as we navigated Susan's early life without a food allergy diagnosis, without epinephrine...

While I will never know for certain what happened that Halloween day when Susan was thirteen months old, I now believe (and will likely always believe) that that was her first anaphylactic reaction to...peanut.
(And to think I was terrified when I thought she might be allergic to chocolate...)

It never occurred to me that Susan could have had such a terrible reaction to a single plain M & M as the result of a peanut allergy, but I now know that plain M & M's can be highly cross-contaminated with peanut protein...and so, in my mind, it will always be a single (plain) orange M & M that nearly took Susan's life when she was thirteen months old.


And so, when Susan turned 13 one day after Dr. Bajowala cleared her to begin eating potentially cross-contaminated foods (one food at a time, one per day), there was no better way for Susan to usher in being 13 than eating the very same food that nearly killed her when she was thirteen months old -- M & M's.  This time, thanks to PRROTECT and her continued OIT treatment with Dr. Bajowala, instead of suffering anaphylaxis after the first one, Susan ate more than we could count -- Plain, Krispy, Mega, Mini, Mint and Pretzel!  (She liked them all, of course!)

So proud of the grit, determination and bravery it took for her to get to this point!

Success!

I think anyone who knows me well would agree that I love surprises...and gift-giving.  I don't even need a reason to give a gift -- just for fun is good enough for me.


Sitting with Dr. Bajowala after Susan took her increased peanut dose, Susan (and I) got a huge surprise -- and since it was the day before Susan's birthday, it also felt like a tremendous gift!

After watching Susan consume 4500 mg of pure peanut (about 2250 mg of peanut protein, or 4 1/2 peanuts), Dr. Bajowala opined that she felt that given how well Susan was tolerating her daily peanut doses, as long as Susan tolerated the updose, Susan could begin eating foods with risk of cross-contamination with peanut.  

(That's a lot of peanut!)

The updose I had feared earlier in the day, it seemed, pushed us over an invisible line...
Crazy.
Incredible.
Unreal.

As we no longer avoid foods with risk of cross-contamination of tree nut (Susan is allergic to some tree nuts, although she eats almonds without issue), this was a tremendous gift! (To those following closely, soy is still a concern, and Susan does not eat anything with concentrated amounts of soy protein, but there are still countless options!)

Ice cream and cupcakes and candy!

Oh my!

Asian and Indian and Thai!

Oh my!

The list of places Susan has never eaten, things Susan has never done stretches endlessly...limitations I have never really allowed myself to consider, focusing far more instead on the daily tasks involved in keeping her safe.  But, when I stop to think about the ways in which Susan's life has been limited, it steals my breath away, makes me teary...for Susan, for the thousands of children walking in similar shoes...and I feel simultaneously thrilled and scared (oh sososo scared) of this giant step out of our carefully constructed comfort zone.

Where to begin?

Carefully, ever so carefully, of course.

After some discussion, we agreed that Susan could try one new food or place a day, and Dr. Bajowala casually noted that there was an Oberweis Dairy store just across the street from her office.  

(I had this feeling she'd said this before.)

Susan was torn -- go directly to GO (err, Oberweis) after her appointment or wait until later in the day to have ice cream with her friends.  And WHERE should her first grand ice cream eating experience be?  (Since it was the end of August, Susan was pretty certain that ice cream was the place to start.)  

While her hour-long observation period ticked by, Susan texted with some of her friends.  I think she maybe even invited them to go with her for ice cream later in the day.  (I'm pretty sure she told two of her friends, who were on vacation, that if they got in the car and started driving, they could be back in time for ice cream!)

And then...she suddenly decided she really didn't want to wait...and I found myself more and more liking the idea of having Susan's first ice cream eating experience near her allergist's office.  

As we sat there, processing the unexpected gift of...freedom, I tried to hide my fear. Before the clinical trial, absolutely every single one of Susan's anaphylactic reactions to peanut were the result of casual contact or airborne exposure -- none of Susan's anaphylactic reactions have ever been the result of actually eating peanut.  Because of our history, I have a very healthy respect for cross-contamination.

That said, this...freedom...her belief in a better, freer future...is what has driven Susan through the hardest parts of the clinical trial.  

My belief that despite the carefully constructed box we have lived in for the last 10+ years of our life, at some point, somewhere, something would happen that would result in Susan having an out-of-the blue anaphylactic reaction has been the driving factor behind supporting Susan's desire to see the clinical trial through -- and to seek additional private oral immunotherapy during the 5-year follow-up study (talk about the best of both worlds!).

My belief that our carefully constructed box would not always contain this awesome child of mine is what drove us to seek treatment -- any treatment, anywhere anyone would have her...

Thrilled and scared beyond measure, I agreed to take Susan to Oberweis Dairy and Ice Cream Store after her appointment with Dr. Bajowala.  And then I got scared.  Really, really scared.  

What if?

What if WHAT?
What if...she has a reaction?

Well...she'll administer epinephrine, and then she'll take Benadryl, and we'll call Dr. Bajowala (that's our protocol, although anyone who receives epinephrine should call 911 and seek care in an Emergency Room immediately).  We've done this, we know what to do.

My what if really wasn't about anaphylaxis.

It was about what it would mean if Susan had a reaction after eating ice cream...or anything else potentially cross-contaminated.

What would THAT mean?

I tried to tell that persistent voice that we would deal with those issues if they came up...and I tried not to think about what it would mean if Susan had a reaction to ice cream...or any of the other things she was excited about trying.

Pushing down the doubting voice, I suggested to Susan that we go shopping at Woodman's Market (which we LOVE and which is also very near to Dr. Bajowala's office) to allow a second hour to pass between her updose and her first-ever typical ice cream experience.  She agreed, and we bumped into a food allergy mom who recognized Susan from her video, which was an interesting surprise for Susan (I don't think she really gets how closely some people are following her journey...).

Next stop, Oberweis Ice Cream and Dairy Store.

The kind scooper at the counter was confused as I explained that Susan had a peanut allergy, and that because of the severity of her peanut allergy, she had never been in an ice cream shop with freedom to taste all sorts of flavors.  I then explained that because of a clinical trial and on-going treatment Susan was involved in, she was now cleared to eat things that might be cross-contaminated with peanuts.  As the scooper shifted into allergy mode, a part of me was tempted to just let her do her thing -- after all, an added layer of protection would be nice, right?!  Well, maybe.  And maybe not really.  For while I was scared of what might happen, the logical side of me knows that for Susan to benefit from all that she has been through, we need to be sure she doesn't need those kinds of accommodations.  And how to explain to the kind scooper that no matter WHAT precautions they have in place, there is NO WAY we would ever have let Susan have ice cream from there before this.

Fighting down my fear and choking back tears, I liberally interpreted Dr. Bajowala's "only one new food or place" a day to mean Susan could try ALL non-nut containing flavors at the Oberweis Ice Cream and Dairy Store.

Chocolate
Chocolate Chip
Birthday Cake
Black Cherry
Chocolate Marshmallow
Coffee
Cookie Dough
Cookies and Cream
Mint Chip
Dulce de Leche
Expresso Caramel Chip
Raspberry Sherbert
Lemon Sorbet
Blueberry Pie
Strawberry
Vanilla
Orange Sherbert
Key Lime Pie
Apple Pie
Cherry Pie

She tried them all!

And she campaigned to bring some home...
     (How could I say NO?  Especially when Susan suggested we take advantage of their sale...)

But there was NO WAY she was waiting until we got home to dig in, so she picked her two favorites (although they were "all so good") for the car -- Chocolate and Mint Chocolate Chip.

Incredible.

The power of OIT.

The power of believing in the possibility of a better, freer life.