Photo by Rebecca Gould Photography

Friday, July 8, 2016

Significant Risk of Severe Anaphylaxis

We live in an information age.
Cell phones, tablets, computers…with just a few key strokes, the answer to almost any question is available.

News -- good and bad -- spreads with lightning speed…
E-mail, text messages, Facebook…

Whereas I used to have to wait for a call from my pediatrician or allergist with lab results, thanks to a patient portal, I am now able to see the lab results as they are released…

Ten years ago, I never would have gotten lab results on a holiday.
But this year, on July 4th, 2016, I watched Susan’s lab results trickle in.

We were at the beach when I saw the first e-mail notification come in, indicating that lab results pertaining to Susan’s recent food allergy testing were available for my review in our pediatrician’s patient portal.

The e-mail notification gave me pause.  While Susan has had countless vials of blood drawn since she was enrolled in the clinical trial, we have never been privy to any of the results.  I have read enough, researched enough, spoken with enough doctors to know that it is likely that Susan’s IgE to peanut increased from 360 to some number even higher than that already outrageously high number when she first began eating peanut…and then, slowly, over time, that number likely began to go down. 

Despite knowing that that is probably what happened, faced with the moment of truth -- with, after nearly two and one-half years -- finally seeing a real number…I hesitated.  I felt a bit of fear in my stomach.  I wasn’t sure exactly what I was afraid of, for really…the number shouldn’t matter. 

We traveled a rocky, sometimes steep and definitely unpredictable journey as Susan slowly, painstakingly worked to teach her body’s immune system to treat peanut differently.  A journey in which Susan’s body, which viewed peanut as the enemy, was taught to (at least most of the time) view peanut differently -- to look the other way, or to view peanut through a more tolerant lens...a journey we label a "success" despite how very hard it was.

Knowing I would not be able to navigate the patient portal to my satisfaction on my phone, I waited until we were back from the beach to pull up Susan’s lab results.

It was immediately clear that not all of the results were in…and that I would have to open each and every result (we tested for peanuts, all tree nuts individually, soy and hemp) to get to the one I cared about the most -- peanut.

As I clicked through the results, I was pleasantly surprised to see that Susan tested negative to...

Walnut, Class 0 (<0.35 kU/L)
  As expected.  Years ago, we successfully introduced these to Susan at home, but since she hated them, and we did not understand the importance of her continued consumption of them, we allowed her to stop eating them.

And then there was pistachio.
Pistachio, Class 1/Equivocal (0.42 kU/L)
  Okay. -- No surprise there.

And pinenut -- a nut we had never tested for individually.
Pinenut, Class 0 (<0.35 kU/L)

And pecan -- a nut I recently described as "desserty" while trying to distinguish various nuts for Susan.
Pecan, Class 0 (<0.35 kU/L)
  Great!  But...that’s news.

And then, the result I was looking for -- peanut.
Peanut, Class 5/Strongly Positive (92.20 kU/L)

  That took my breath away.
  Class 5 -- with an asterisk which read:  “significant risk of severe anaphylaxis"

  It was a stark and sobering reminder of what, in reality, I already knew.
  Susan is deathly allergic to peanuts.
  Susan is NOT cured.
  Susan should always carry epinephrine.

  I allowed Susan the same experience I had...
  of reviewing the results one at a time...
  of coming upon the peanut result, for I wanted to see her measure my reaction against hers.  
  I watched, waited.
  And Susan's eyes met mine -- I could tell -- we were in synch.  

  While Susan's IgE for peanut has decreased (from 360 to 92.20), she is still very allergic to peanut.  As incredible as the result was, it was also a stark and sobering reminder of what, in reality, I already knew -- this is a marathon, not a sprint...and we are still far, far from the finish line.

  For if Susan were to meet too much peanut (in a dark alley), or when her defenses were down (or hormones up)…anaphylaxis might well rear its ugly head...again.

  It was a stark and sobering reminder of what, in reality, I already knew.
  OIT is a treatment, not a cure.
  OIT is a pathway to a safer, freer life…but it is not a simple, easy, "quick fix."

  OIT is a dance with danger…
  Beautiful, freeing…and yet filled with inherent risk.
     (And yet, I remember all too well the risks we faced every time Susan left the house, every time we fed Susan...and the risks we DID NOT take...the travel we did not do, the places we did not go, the food we did not eat...the experiences we never even contemplated.)

  OIT is a shift in lifestyle -- away from avoiding the (oft invisible) danger(s) to...managing the risk...meeting the enemy face-on, in a controlled is part science, a lot that challenging the very thing that holds the power to kill you you.

  OIT requires commitment, diligence, attention.

  Done well, done carefully, OIT is everso worth the risks.

And so, as hard as it sometimes is, as uncertain as the journey has been at times, I was pleased to see Susan's pediatric allergist's recommendation yesterday:  "continue OIT."

With this, Susan will continue to take her daily morning dose of approximately 10 peanuts and her afternoon/evening dose of approximately 8 peanuts.  And every day I will marvel at the fact that she is able to (at least most of the time) consume a potentially lethal amount of peanut...twice daily.  Amazing.

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