Photo by Rebecca Gould Photography

Sunday, July 17, 2016

(Why) I Am Not Mad

I am not mad.
I am not angry.
I am not upset...
     (although I know a lot of people who think I should be...)

I do not blame anyone who cared for Carl on Monday and Tuesday for any of what transpired during what we believe was an anaphylactic reaction to a bite or sting.

I am not mad, angry, or upset with any of them because I believe each and every person involved in Carl's care did what they thought they should be doing at the time.

I am not mad, angry, or upset with any of them because I believe each and every person truly cared for Carl as they would have cared for their own child.

I am not mad, angry, or upset with any of them because I remember full well the times when I did not administer epinephrine to Susan and I should have.

I remember the first time.
We were on an airplane.
Susan was wheezing, coughing, gasping for breath.
Clearly -- one major symptom.

I remember the first time.
We were new to anaphylaxis.
I thought it was impossible...
  for Susan to have an anaphylactic reaction without eating something.
There was so much we did not know.

I remember the first time.
A medical doctor -- surely more informed than I
   advised against administering epinephrine, cautioning me on how dangerous it could be.
   (she could not have been more wrong)

I remember the first time.
There was so much we did not know.
We got lucky that day.
Soso lucky.

I remember the second time.
We were in a movie theater.
Susan was wheezing, coughing, gasping for breath.
   I later discovered that she had a dusting of hives on her chest.
Clearly -- one major symptom..and one minor symptom.

I remember the second time.
We were still new to anaphylaxis.
I still thought it was impossible...
  for Susan to have an anaphylactic reaction without eating something.
There was so much we did not know.

I remember the second time.
I was afraid to administer epinephrine.
I was afraid...of the epinephrine.
I was afraid to give it if Susan did not really, truly need it.
   I was label what was happening anaphylaxis...
   I was afraid to call it an emergency.
I was many things.
I wasn't thinking about what should have been my biggest fear that day.

I remember the second time.
There was so much we did not know.
We got lucky that day.
Soso lucky.

With more than ten years of managing Susan's food allergies, and a bit of a crash course in anaphylaxis during the clinical trial, I now believe learning to recognize and manage anaphylaxis is, for most, a skill that develops over time.  It comes with experience, and matures with the understanding that epinephrine works best before someone is in significant distress.  It comes with a matured understanding of the risks of anaphylaxis -- with the understanding that what one can see is only a small part of the cannot see lungs filling with fluid, a throat that is swelling shut, a slowing heart rate, dropping blood pressure...all of which render the body increasingly less able to do its job.

And I venture to say that some...if not many...if not actually most...parents of children with life-threatening food allergies would admit -- even if only in the deepest recess of their mind, the place they rarely go -- that there once was a time when...(now, on the safety of the other-side-of-the-reaction) -- they themselves should have administered epinephrine, but did not...

I am not mad, angry, or upset with any of the individuals who cared for Carl because once, as hard as it is for me to believe now, there was a time when I might have made a similar series of decisions.  

My original blog post was a call to action, a call for greater awareness -- a call for education on the signs and symptoms of anaphylaxis and a call for more uniform availability of epinephrine in emergencies.  Please, let this be the same.

Wednesday, July 13, 2016

Anaphylaxis, or We Got Really Lucky Yesterday

We got really lucky yesterday. 
(I’m going to start there, but hope people will read on, because our story could have had a terrible ending, and education is the key…)

While my blog, Eating Peanut, is about my daughter's life-threatening food allergies and her journey through an Oral Immunotherapy (OIT) clinical trial, I am going to share this story about my son, Carl, here.  It is relevant because, without our experiences eating peanut over the last 2 1/2 years, I might not have understood the significance of what was happening, either.

It started with a phone call from the scoutmaster Carl is attending overnight camp (nearly 5 hours away) with this week -- at 11:15 am.  I knew it couldn’t be good.

But I wasn’t ready for how very bad it was.

The scoutmaster explained that Carl had been bitten or stung by something (bee, spider, who knows?  We might NEVER know) at camp on Monday.  Because the bite/sting was very painful, Carl had seen the nurse at camp.  She gave him an ointment and he went back to being the very happy Boy Scout camper that he is.

By yesterday morning, the bite/sting had (according to Carl, 11, later) swollen “times a million.”  Unlikely, but I got the point.

The scoutmaster took Carl back to the nurse, who gave him Benadryl and told him to return if anything else happened. 

All good, right?

But then, things changed.
He vomited.
The scoutmaster immediately took Carl to the camp nurse, who assessed.  The site of the bite/sting was even more swollen.  Carl’s blood pressure was elevated and his pulse ox was 94.  He was wheezing, and complaining that his mouth and throat did not feel right. 

The scoutmaster told me they had called an ambulance, and were transporting him to the local hospital.  (I now know that the camp started the summer with three undesignated EpiPens, and had already used one when yesterday rolled around.  As this unfolded, I didn't know that...)

I told her I knew a few things about allergic reactions.
I told her I thought it sounded like an anaphylactic reaction.
I told her I wanted them to give epinephrine.

She told me to hold on…

My kid with no known allergies appeared to be having an anaphylactic reaction.

I was barely breathing when the EMT got on the phone.
She told me her name, but I don’t remember it.
She told me Carl was having an anaphylactic reaction.
She reviewed the symptoms, and told me that the swelling in his throat had doubled since she arrived.

My kid with no known allergies appeared to be having an anaphylactic reaction.

Fighting tears, I asked her to administer epinephrine.
She explained she was an EMT, and could not administer epinephrine.
I tried another tact:  “I am his mother, and I am telling you to administer epinephrine.”

She explained respectfully that she did not have epinephrine.
She told me she had to go, as talking to me was delaying transport to the ER.


The EMT turned the scoutmaster's phone back over to her.  The scoutmaster told me she would follow the ambulance.  I told her I was on my way -- knowing full well that there was nothing I could do in the minutes that mattered, but knowing still that I had to be there for the after -- hoping, praying that the after would not be what I feared.

I was panicking as I tried to gather the papers I was in the process of submitting at the school district office to prove Carl's (and his twin sister's) residency for the following year…

I got in the car and started driving north.  I didn’t know where I was going, but I knew I needed to go north.  North.  North.  Fast.  But not so fast I got a ticket.  NORTH!  I called my husband, and fighting panic explained the situation.  I had him figure out the nearest ER to the camp and nearly vomited when I realized it was thirty minutes away from the campground.

My kid with no known allergies appeared to be having an anaphylactic reaction.

Fighting for calm, trying not to cry, I raced northward. 

Helpless doesn’t even begin to describe how I was feeling.

I called the ER of the hospital closest to the camp.  I spoke with a very kind woman whose name I don’t remember.  I think she was the ER charge nurse.  I was crying and I didn’t know whether to be relieved or scared when she told me they knew he was on his way, that the EMTs were transporting him quickly, that the doctors and nurses were waiting for him, that they were ready with epinephrine for him.

My kid with no known allergies appeared to be having an anaphylactic reaction.

I told the ER charge nurse that I had a lot of experience with anaphylaxis.
I told the ER charge nurse that I wanted the EMT to administer epinephrine.

I told her the epinephrine would not hurt, but that waiting might result in a terrible outcome.
She told me she knew that, but that the EMT did not have epinephrine, but that they would administer it when Carl arrived at the hospital.

I was panicky, and felt incredibly helpless, trapped in a set of circumstances beyond my control.  My kid with no known allergies appeared to be having an anaphylactic reaction.

What I didn’t know at the time was that the swelling around the site of the bite/sting was continuing to swell.  I am glad I did not know.

What I didn’t know at the time was that all they could do for Carl en route to the hospital was give him oxygen.  I am glad I did not know.

When Carl arrived at the hospital, they gave an injection of a fast-acting steroid, gave another dose of Benadryl, drew blood and hung a bag of IV antibiotics -- covering both an allergic reaction and an infection, as they weren’t sure what was happening.

The site of the bite/sting continued to swell at first, and they traced a second line around it, in purple (the EMT’s line -- from about 11:20 am -- is in black, and is fainter in the photo).  The purple line was done in the ER at 12:45 pm.

(Photo taken at about 5:00 pm, hours later.)

As I drove north, I talked to the ER nurse, and to the scoutmaster, and to the ER doctor, and to the very kind woman who I think was the charge nurse.  And I talked to Susan’s allergist, and later, when I knew more, I talked to Susan’s allergist’s receptionist, who kindly took down a detailed accounting of all I knew.  As I got further north, I had to turn the phone calls over to my husband, as cell service was spotty at best.  He talked to Susan’s allergist -- who is now Carl’s allergist.  He talked at length to our pediatrician (conveniently, Susan had her annual physical as our pediatrician’s last appointment of the day).

By the time I was that far north, it sounded like Carl was stable.  I was less panicked, but still scared.  I know the risks of biphasic reactions are greater when administration of epinephrine is delayed.  I suspected the risks were even greater when epinephrine was not administered.

I put my husband in charge of making a plan.
I stopped to go to the bathroom.

I breathed. 

I sent my thankfulness and relief out into the universe.

I have no words for how terrible it was to be trying to educate the person responsible for transporting my son to the hospital on the signs and symptoms of anaphylaxis.  The moment of crisis is not the moment.

It is simple:
Administer epinephrine with any two symptoms.
Carl had five:  wheezing, drop in blood pressure, swelling at site, nausea/vomiting, throat closing

Administer epinephrine with any one major symptom.
Carl had three:  wheezing, drop in blood pressure, throat closing
Strung together like that, I find myself wondering if really that is just one major symptom.  No matter how you count the symptoms, a case for epinephrine was there.

Carl is fine.
We got lucky.
Sososososolucky I feel sick just thinking about it.

Carl’s pediatrician feels strongly that what happened yesterday was an allergic reaction to whatever the venom was.
Carl’s new allergist wants to test for hypersensitivity to a panel of venoms.

Carl is the (proud?) new owner of two EpiPens.  I am (fortunately), confident he knows what to do with them.  I believe -- because of all he has learned by being Susan’s brother -- that he would (and could) self-administer epinephrine if he needed to.  Fortunately, two EpiPens fit nicely inside the cargo-pocket of his Boy Scout uniform shorts. 

In the light of day, I cannot think too much about how lucky we got as I begin working out in my mind the advocacy and education that needs to take place.  I am thinking about Annie LeGere’s mother, who is tirelessly working to be sure all emergency responders have access to epinephrine.

There is so much work to be done.

So much education to do.

What started as a simple journey -- with the goal of protecting Susan from accidental exposure to peanut -- has turned into a lifetime of work.

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.