Photo by Rebecca Gould Photography

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.


  1. Reading this brought tears to my eyes as I know you've been through so much with Susan! Being hours away as your son went through that must have been so difficult. My 6 year old daughter is in a local wooded camp this week and every day I am gripped with fear because it's 30 minutes away from our local hospital, no cell reception and teen counselors. We've told everyone about her nut allergies but as I heard that one camper got stung by a bee, I can't help but be terrified that there is another lurking danger out there while I am 40 minutes away. She has benadryl and epi-pen in her backpack but I still wait on pins and needles for 3pm to arrive every day. I'm so glad your son is alright!!! And thanks for sharing your stories - it gives me encouragement and strength as I go through my own journey with my daughter.

  2. I am beyond mystified how a camp would ever operate without epinephrine available. My daughter had an anaphylactic reaction at cheer practice one day, and the school nurse immediately administered epinephrine -- without my permission or the central administration physician's permision. Because that's what you do.

  3. Why can't a car be sent from the hospital to meet the ambulance midway and administer the epi,it would cut the time in half. When a kid's life is in jeopardy... you'd think it's worth the "cost", right? Obviously the camp nurse made a grievous error in judgement. But that aside, it seems like a no brainer for the hospital to send a car to intercept the EMTs at the midpoint and cut the transport time in half.

  4. I am so sorry you experienced this. Thank you for sharing as awareness and education are critical.

  5. I'm shocked a camp nurse didn't recognize anaphylaxis or know when to administer an epi-pen. I'm even more shocked that EMTs don't carry epi-pens. That's just inexcusable. I'm so grateful your son is okay!

  6. I am SO sorry you had to go through that! Sadly, I agree that there is a lot of educating that still needs to be done. During my daughter's last ANA reaction, they sent an ambulance that had no epi on board and then cancelled the call and sent the right one.... This delayed response time by 10 minutes. She had already had 2 epis within a 7 minute timeframe and was in dire need of a third which we did not have. ALL rescue vehicles should be equipped and ALL public safety personnel should be trained. Period. The policeman who came to our rescue before the ambulance had never seen a reaction. He watched me give her the second one and was panicked and shaking himself. DEFINITELY no help to us. :(

  7. I am SO sorry you had to go through this! We have also experienced an ambulance with no epi or any training that responded to M's last reaction. They called them off, we listened to the sirens fading in the distance. It took an extra 10 MINUTES to get the right one. She had already had 2 epis in a 7 minute timeframe and was in dire need of a third.... That we did not have. There is SO much work still to be done. Every emergency response vehicle needs to be equipped and every personal safety worker needs to be trained. No exceptions.

  8. I have had similar reactions to MSG - monosodium glutamate, which is found in snack foods, processed foods, powdered soups, salad dressings, Far Eastern foods (esp. Thai, Japanese, Chinese), etc. Sometimes listed as simply "spices", MSG is very dangerous for many of us! There is no good reason to "enhance" flavor artificially, when there are real flavors that do the trick just fine without creating medical emergencies!

  9. I think my son is at the same camp - so disappointed to hear that they didn't refill their supply and would be happy to let them know that. I know one family was told that their sons pen would be kept at the nurses office and not on his person - seems risky to me. My daughter also has to carry epi with her and is at a different camp. I had a special letter written stating that it is to be with her at all times and I have checked with the camp nurse and my daughter multiple times to make sure that they are following through. My other son is an EMT and has never heard of an ambulance not having epi on it - but he is in IL and required here in order for a ambulance to be in service. So sorry you all went through this.

  10. So glad Carl is ok. And, "There is so much work to be done. So much education to do." No truer words. Thank you for sharing your story.

  11. Thank you for posting. What a reminder for us all. You did everything right and still, it happened. Please, be kind to yourself as you come down off this traumatic event.

  12. Caryn, what a frightening story! I am a board member on the Annie LeGere Foundation. We are all posting this blog on our Facebook's. Thank God that Carl is ok. Thank you for sharing! xoxo Elizabeth Ambrogi