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?

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.

GO!

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.