Photo by Rebecca Gould Photography

Tuesday, October 14, 2014

Way Back When (A Retrospective/Our Food Allergy Story)

Everyone has a story they tell about how they discovered their child had food allergies.

I suspect, actually, that most people have several versions of their story...
-- There is the "elevator speech" version, a 20-seconds or less encapsulation of what was likely one of the most frightening times of their life as a parent --
-- There is the "disgruntled parent speech" -- the impassioned plea for understanding and compassion delivered in the face of those who just don't get it...
-- And then there is the real story -- reserved for those who really want to know, who listen, express concern and care, ask probing questions. 

I don't think many parents of children with food allergies often tell their full story.

Since I have begun writing about Susan's journey, I have had many people ask for more information about the past -- about Susan's life (our life) before Eating Peanut began.

I have spent a lot of time thinking about our story -- I think there are three parts.  Before, Now After that is substantially different.

In my head, Susan's story begins with a single plain M & M I gave her on Halloween day.  She was just 14 months old, and it was her first chocolate, although she had had chocolate frosting.  I knew almost immediately that something was wrong -- she sort of choke/gagged on it and just as I was frantically trying to extract her from her high chair, thinking she was choking, she managed to dislodge it along with a thick ball of sticky mucus.  She was gasping, and continued to cough (gag) up phlegmy white...stuff.

I was alarmed -- I had never seen anything quite like what was happening with Susan, and it did not seem right.  Once I was sure she was breathing well enough, I called my (first) pediatrician (who specialized in allergy and immunology).  He was not available to take my call, so I left a message with a nurse who I'm pretty sure thought I was a panicky first-time mother.  Anyone who knows me knows I am decidedly NOT panicky, but...I do think that's what her assessment of me was at the time.

My pediatrician called me back a few hours later (by which point Susan was fine).  He was confident she had a stomach bug, and advised me not to take her out for the rest of the day (or night).  I was disappointed -- she had a darling teddy bear costume I wanted her to be able to Trick-or-Treat in and I was puzzled, too, as it just didn't seem to me like Susan was sick.

I inquired, with fear in my voice (and heart) -- Could she be allergic to chocolate?  My pediatrician assured me that there was no way she could be allergic to chocolate.  (Bear in mind that he is now my former pediatrician.)  He explained that children are rarely allergic to chocolate.  After learning that she had previously had chocolate frosting, he asserted strongly that if she were allergic to chocolate, Susan would have had a reaction the first time she ate it.  He inquired about hives, which I denied.  He added that nothing I described sounded like a food allergy.

Since our former pediatrician specialized in allergies and immunology (a fluke, not a conscious choice), I let my concerns about a chocolate allergy go, breathing a sigh of relief.  (I do love my chocolate...and I am happy to say that Susan does, too -- she just cannot eat any that might be cross-contaminated with peanuts...and as I have come to understand the severity of her peanut allergy, I have come to believe that that plain M & M way back in 2003 must have gotten too close to a peanut M & M...).

With all that I have learned over the years, I now know that Susan's allergy story actually begins earlier -- a lot earlier.  While Susan was a darling baby -- smiley, easy-going, generally content and happy -- her cheeks and chin were often red and irritated.  To this day, I remember an encounter I had in the grocery store with a very elderly woman who got too close for my comfort and then asserted (right in my face) that Susan "would have a life of food allergies."  At the time, I backed away, thinking she was...crazy -- demented...senile.  (I can honestly say -- as pathetic and uneducated and irresponsible as it now seems -- that I did not understand the connection between food allergies and skin...)

(I wish I could say those cheeks were rosy from the weather, but, in truth, that's how they always looked...)

But really, Susan's food allergy story -- the story of my family's journey down this very scary path -- begins earlier than any of those things I can truly identify...I just don't know where.

-- Is it a matter of genetics?  Years ago, we participated in a study at Children's Hospital -- the results revealed that my husband had a peanut allergy.  Who knew?  He lived on peanuts and peanut butter as a was a staple in our vegetarian house until the severity of Susan's food allergy became apparent to us. 

-- Or what if it is the result of the infertility treatments we underwent?  Did our quest for a child in some way make Susan more vulnerable?  I haven't seen any official study results, but it is my strong impression that children who are borne of infertility treatment are more likely to have food allergies.  (Incidentally, I think the same is true for multiples...although my twins -- also borne of infertility treatments and quite clearly multiples do not have any food allergies.)

-- Terrifyingly, what if the peanuts and peanut butter (and almonds and cashews and walnuts) I ate while I was pregnant with Susan -- and while nursing her contributed?  What if something I ate brought this on her?  Even now, more than 10 years since I stopped nursing Susan, it makes me feel just a little queasy to think that the very things I ate in an effort to nourish myself (and in turn her) could have played a role in the development of her food allergy.

-- What if those immunizations I refused to give concurrently -- frustrating my pediatrician, I am sure --altered her immune system allowing this crazy peanut allergy to move in and set up residence?  I have never been certain about immunizations -- I know there is research that both supports and discredits the idea that immunizations can lead to terrible conditions like autism, ADHD and asthma (and food allergies is on that list these days, although it was not at the time that we had to make vaccination decisions)...and I am always careful not to start the debate -- for who really knows the answer?

Sadly, while progress is being made in the management and treatment of food allergies, there is much that is still not understood about underlying causes...and I believe we are years away from anything that could truly be called a cure.

As I sit reflecting on Susan's food allergies -- the ways in which they have, despite our best efforts -- defined and shaped her life -- I feel tears pricking my eyes, and the back of my throat gets that tight, tingly feeling I always have when I am trying not to cry.

I think about the prenatal vitamins I took long before I rejoiced in the news that I was pregnant with Susan, the grams of protein and servings of vegetables I counted from the first possible moment of inception, the sleep I made sure I got every night...the wine I did not drink...everything I did to try to ensure that Susan had the best possible start in life...and I feel -- terrible thinking anything I did, any decision we made -- contributed to Susan's food allergies.

And while I have worked hard over the years to accept that there is no way to change the past, and to accept the idea that even if I could change the past, it might not make a difference...for what would I change?

What I did not know until years after the episode with the plain M & M was that -- as the result of a very unlikely series of events -- Susan was given a peanut-butter filled cracker from one of those very processed packages that are typically sold in vending machines while she was with a babysitter.  (Of course, because of the way things played out, she was NOT with our regular babysitter...she was with a babysitter who was helping out our regular babysitter, who had Susan-responsibilities for a longer-than-typical time period while I was in Indiana for work).  I have heard that Susan didn't really eat much of the peanut-butter filled cracker...but that's all I know about her first exposure. 

I sometimes think about those peanut butter crackers...and I wonder -- what if?  (The list is long...)
  -- What if we hadn't needed a substitute babysitter for an hour?
  -- What if I had known more about food allergies?
  -- What if I had told the young woman who was responsible for my child that she should not give Susan anything containing peanuts?
  -- What if I hadn't been working?

And the worst...?
  -- What if what I now believe was Susan's first exposure to peanuts had been...worse?

After the M & M incident, Susan became the queen of random weird gagging/choking/vomiting episodes.  While they did not have enough in common for me to ever tease apart a true cause, they happened while we were eating out more often than while we were eating at home...they came on fast, were violent, and quickly as whatever it was started, it was...over. 

I talked with my pediatrician repeatedly about these "vomiting" episodes.  I tried to explain that it was more that Susan was coughing and gagging to the point of vomiting -- and I underscored that the "vomit" was more like thick, sticky mucous.  Looking back, I now know that my momsense was telling me something important -- I just did not really understand what it was at the time.  With every episode, I grew more concerned that something was wrong -- but what?

Eventually, despite my pediatrician's reassurances, I started to think food allergies must be playing some sort of role...but I couldn't figure out what the "common denominator" was.  I had a friend whose daughter was diagnosed with allergies to dairy, egg and tree nuts...but her symptoms were much more typical (read:  hives).  Had anyone suggested I keep a food diary, I suspect I would have started to pull the threads together on my own -- chocolate (often cross-contaminated), things that had been deep-fried, eating out...

Rereading this, I am mortified by how little I knew.
And then I remind myself that this was more than ten years ago.
(People didn't know then what they know now...)
And when I think about what I now know...there are simply no words.

At Susan's two-year check-up, I expressed my concern that Susan might have a peanut allergy.  I did not have much in the way of real "evidence," and when I denied ever having seen a hive on Susan, my (former) pediatrician expressed his confidence that Susan did not have food allergies.  I don't recall exactly what he said, but, I do remember leaving his office thinking "SOMETHING is not right."

During that 2-year check-up, my pediatrician (now former, remember) suggested I give Susan a small bit of peanut butter to "see how she did."  Uncertain, but, wanting to trust him (after all, he specialized in allergies and immunology and at that point there was so much I did not know about food allergies), I followed his instruction and presented Susan with an entire piece of toast smothered in peanut butter.  (I had NO IDEA what I was dealing with at the time, and thinking back on that moment makes me feel ill, even now.) Susan did not want to eat that (deadly) peanut-butter-on-toast, which was uncharacteristic of her.  I pressed her and she eventually took a tiny bite of it, started crying, gagged on it, and then spit it out.  Even after she had "vomited" it up (I struggled with the use of the word vomited, because what she was doing was much more violent than any form of vomiting I had ever seen -- it just didn't seem like that accurately described what was happening for her), she continued gagging and choking and seemed to be having some trouble breathing.  Eventually she coughed up a big phlegmy ball and then seemed fine. 

I called my pediatrician, who reassured me that Susan was, indeed, fine -- he asserted that she could not possibly have food allergies, or she "would have gotten really sick" when she ate the small bit of peanut butter.  She did not develop hives, which further supported his belief that she was not allergic to peanuts.

Uncomfortable, and feeling absolutely certain that there was something else going on -- I worried.  But (as hard as it is for me to admit this now), I really did not focus on food allergies -- I worried about reflux and feared that there was something malformed in Susan's esophagus...and dreamed up countless other equally ridiculous things.

A few weeks after the peanut-butter-on-toast incident, I gave Susan a part of a chocolate Zone bar.  I was driving, and snacking on it because I was nursing her newborn twin siblings.  She asked for a piece of the chocolate Zone bar, and after reading the wrapper to be sure there were no peanuts in it (while at a stop light), I broke a piece off and passed it back to her.

To this day, I am profoundly thankful that she was as verbal as she was at that point.  Within a minute of eating a bite or two of the bar, Susan began coughing, wheezing...and then vomiting violently.  I do not do vomit well, and as I was trying to comfort her while also trying to pull her out of my van as this unfolded, it is all a bit of a blur.  But, I will never forget what she said when the worst was past:  "Mommy, it was just like when I ate the peanut butter toast."

And even though we were a pediatrician change and weeks away from a definitive diagnosis, I knew in that moment that Susan was allergic to peanuts.  What I did not know -- what I could not possible understand or process in that moment was the extent to which Susan was allergic to peanuts...and the way in which her food allergies would change her life...our lives...the ways in which, despite our best efforts, they would define us...and maybe even her.

Weeks later, I met with a new pediatrician (looking back, I am ashamed to admit that we made the change for reasons that had nothing to do with food allergies...) -- I had interviewed him over the phone and, after deciding I liked him, I had scheduled an appointment for Susan to see him for a "check-up."  During our visit, our pediatrician-to-be reviewed my children's medical history.  My twins had had some issues, and we spent a lot of time talking about physical therapy, speech therapy...occupational therapy.

And then, just as I thought we were done, my pediatrician-to-be circled back to Susan.  He must have seen something, because he asked about her skin.  In response, I blurted out, "I think she is allergic to peanuts."  She looked at me.  He looked at me.  I no longer remember what I said, but, I don't think it made sense.  

My pediatrician-to-be looked at me, and even knowing we hadn't committed, he said, "What do you mean you *THINK* she is allergic to peanuts?"  I explained -- I still remember the defensive feeling, the rush of blood to my face, words falling out of me -- as I explained that our (former) pediatrician had stated that there was no point in testing for food allergies prior to the age of three.  I remember well the look that flitted across my soon-to-be pediatrician's face before he said firmly -- "Well, I disagree.  Before you leave here today, I want you to have blood work done."  

The pediatrician did not ask me why I suspected Susan had a peanut allergy -- in retrospect, I now understand that it does not matter why a parent thinks their child has a food allergy -- merely the suspicion is enough to merit testing. 

A few hours later, my cell phone rang.  I did not recognize the number -- and as I was still in the interviewing process, I had not put the pediatrician's number in my phone.  I was surprised when the pediatrician identified himself, quickly saying that Susan's RAST for peanut was higher than any he had ever seen (it was a 78).  He wanted to know where I was, and told me that he wanted to call a prescription for Epi-Pens in to the nearest pharmacy.  He told me I should pick it up immediately.  He added that I should not let Susan eat anything until I had the Epi-Pens.  I no longer remember quite what I said, but, I do know that he clearly instructed me that Susan should not eat any new foods...and that he told me we needed a pediatric allergist.  

I remember having a hard time taking it all in -- it in a matter of a few hours, I had gone from suspecting that Susan had a peanut allergy to us needing to carry around Epi-Pens and being referred to a pediatric allergist.  

The pediatrician was reassuring, and said that he could see us the following day, if I wanted to be seen.  In a split second, I decided that he would become our pediatrician, and I told him I wanted to see him the following day.  

I remember not knowing what to think...and while I think I was at least a little bit afraid of the diagnosis of a food allergy, more than anything, I was confused and uncertain. Looking back, if I had known how serious Susan's food allergy was, if I had understood how it would impact her life...if I could have foreseen the reactions she had without ever actually consuming a peanut, I would have been terrified.

I should have been terrified.
It was only over time that I came to understand how truly frightening food allergies could be...

1 comment:

  1. My pediatrician told me the same thing blood test were not accurate until they were 2 and to just avoid peanuts. In hindsight, I can't believe she didn't prescribe us an Epi pen and of course when we did go see the allergist they said we could have come for blood work when my daughter had her reaction at 15 months. Stubbled across your blog and decide to start at the beginning, can't wait to keep reading. Thank you for your efforts and commitment to the clinical trial