Bella Andjelkovic is a senior at Wilton High School.
The worst part of a food allergy is doubting it yourself.
The overwhelming sensation of throat scratchiness, the sudden appetite loss, itchy tongue, shallow breathing … Every time I feel it, I deny it, convincing myself it’s something less serious than what it is. In the moment, that’s easier to process.
But it’s difficult, and incredibly dangerous, to deny a life-threatening experience.
Since time is of the absolute essence during anaphylaxis — a severe allergic reaction mainly caused by foods, medicines, and insect stings — it’s crucial it’s recognized and handled as quickly as possible.
In food-induced anaphylaxis, once an allergen (something that causes an allergic reaction) enters the body, the immune system mistakenly reads even the tiniest amount as a threat and overreacts, setting off a physical chain reaction. Both patients and healthcare providers often misunderstand it because each reaction can differ slightly depending on what protein and how much was ingested, or the individual’s state of health at the moment of exposure. Some people have more severe reactions after exercising or fighting a virus. These individual differences, along with panic and denial that often sets in, complicate immediate treatment decisions and waste critical time.
I’m allergic to nuts. I never go anywhere without my epinephrine auto-injector, and I scrutinize every bite of food as though I may die within the next 10 minutes — because I can. Friends sometimes think I’m too careful, maybe even a bit dramatic. Simultaneously, however, they marvel at the potential severity: “Do you ever think how crazy it is?” they ask. “A single nut could kill you.”
They’re right; it is hard to believe, but the answer is yes, I do think about anaphylaxis every day and it terrifies me more than I like to admit. After experiencing several anaphylactic reactions, I’ve unfortunately realized how very real it is. That’s why I spend so much time checking labels, making sure my epinephrine auto-injector is in my pocket before I eat, and asking waiters — sometimes multiple times — to make sure my food is safe.
Despite being “too careful,” there are variables out of my control. Trust me, I’d do anything to avoid the horrible symptoms — vomiting, extreme anxiety, and a strong sense of impending doom that so many peers without life-threatening food allergies can’t understand — but I’ll never have x-ray vision.
I’ve learned anaphylaxis is often a subjective diagnosis, and epinephrine is often underutilized by both patients and medical professionals. It’s time to facilitate important change through beneficial education and awareness on all levels: for patients, community members, and health care providers.
Gasping for Breath
This past March, as I gasped for breath while plunging my Auvi-Q (a newer brand of epinephrine auto-injector) into my thigh, reality hit me: this could have been it. All because of a stupid nut — a supposed pine nut — that somehow made it onto my dinner table, despite my best efforts.
While I wish my reaction never happened, in many ways, I’m thankful it did. It forced me to practice administering epinephrine on my own before heading to college. And the differences in my emergency experiences opened my eyes to potential confusion about treatment objectives and forced me to delve deeper.
That night, in the ambulance on my way to Norwalk Hospital, I was surprised (and concerned) that the Emergency Medical Technician (EMT) didn’t recognize the epinephrine auto-injector in my hand. I quickly educated her about the Auvi-Q and described my symptoms, which she appreciated.
After I arrived at Norwalk Hospital’s ER, there was confusion and debate, until the EMTs, nurse, and doctor ultimately decided to treat me with IV steroids and an inhaler, despite the appearance of new welts and hives and another wave of difficulty breathing.
I’d always been told to inject more epinephrine if I began reacting again within 10-20 minutes, but it was hard to speak up in my current condition. I was worried — but curious too: If anaphylaxis sends someone to an emergency room every three minutes, how could it prompt so many questions for all of us in that room? How should patients and doctors make treatment decisions in critical moments after a reaction? How are medical professionals trained to handle anaphylaxis? Is it ongoing and consistent? And what role does epinephrine play in anaphylaxis treatment compared to other types of medication?
I wasn’t the only one asking these questions. Wilton mom Jessie Adams also experienced inconsistency with her son’s anaphylaxis treatment. The first time he ate a nut, she was told she’d done the wrong thing by not administering epinephrine before calling 911. The second time he had a reaction, she did give him epinephrine but an EMT later told her she’d “jumped the gun a little.” This contradictory information confused Adams and she worried about others dealing with food allergies who rely heavily on medical personnel to tell them what to do.
This inconsistency isn’t exclusive to Fairfield County. Sarah Krahenbuhl, a mom in Phoenix, AZ, had a similar experience. After drinking milk, her son went into anaphylaxis. Instead of administering epinephrine in the ambulance, first responders told Krahenbuhl her son only needed Benadryl. Later at the hospital, she was informed her son, in fact, should have been given epinephrine. Now, Krahenbuhl works to ensure her community’s first responders are properly educated by holding an annual pediatric symposium.
These testimonials showed first-hand experiences could be instrumental in raising awareness about improving consistency in identifying symptoms of anaphylaxis and the best course of treatment.
Going Straight to the Source
I contacted Norwalk Hospital emergency medicine physician Dr. Brian McGovern, who graciously met with me. He acknowledged “epinephrine isn’t given nearly enough” for a variety of reasons.
Epinephrine is another name for adrenaline, a commonly-known hormone the human body already produces. In an allergic reaction, injected epinephrine can reduce rash/skin swelling, open constricted airways, and increase blood pressure and heart rate, all of which are affected during anaphylaxis.
Part of the stigma surrounding epinephrine is that its use in hospital settings is reserved for very sick patients. It’s used for patients experiencing anaphylaxis, severe shortness of breath, critically low blood pressure, and even cardiac arrest.
“[There’s a] mystique around epinephrine being this crazy, strong, life-saving medicine,” McGovern explained, and some clinicians misinterpret it as being too powerful and capable of causing a dangerous outcome. McGovern believes this ‘superstition’ should be dispelled when treating anaphylaxis.
Anaphylaxis symptoms can also be tricky. Objective symptoms (those you can see through observation) include shortness of breath, loss of consciousness, hives, and swollen lips; subjective symptoms (those you cannot see through observation) include itchy tongue, closing throat, dizziness, nausea, and stomach pain.
Patients can also experience similar delayed symptoms after initial treatment, which can either be a continuation of the initial reaction, where the initial symptoms aren’t completely treated; or a biphasic reaction, otherwise known as a rebound reaction, which typically occurs within 48 hours after a reaction completely disappears (no continued allergen exposure).
In every anaphylactic reaction I’ve had, I’ve experienced one of the two. For instance, at the age of five, I accidentally ingested a walnut. I remember being given one dose of epinephrine by my mom at home and a second dose of epinephrine in the ambulance by EMTs on the way to the hospital because the first injection wore off and symptoms continued. This is the advisable course to ensure symptoms are properly treated.
However, since many symptoms aren’t clearly observed, medical professionals may hesitate to officially diagnose a patient with anaphylaxis or fail to recognize a rebound reaction in time. McGovern emphasizes that communication between patients and health care providers is extremely important. Verbalizing current symptoms, interventions administered, and previous similar episodes can help greatly.
But this raises another important question: Isn’t it possible that communication could be difficult for individuals having first-time allergic reactions or unable to speak because they can’t breathe?
“There’s a whole spectrum in between, and we don’t know where this meter is going to fall. So that’s where it becomes a subjective issue,” McGovern explained.
The Other Players
To learn more about current EMT training and epinephrine use, McGovern recommended I speak to two other important members of the medical field: Wilton Volunteer Ambulance Corps (WVAC) Secretary and Field Training Officer Elana Everett and Norwalk Hospital Emergency Medical Services (EMS) Director Aaron Katz.
In her training role, Everett knows a lot about WVAC’s present curriculum and protocols.
“While there’s a National Registry of EMTs that creates guidelines, it’s up to each individual State Department of Public Health, Office of Emergency Medical Services to create the protocol,” she said.
In Connecticut, EMTs are allowed to give only oxygen and epinephrine to patients, whereas paramedics — with more training than EMTs — can also administer steroids and diphenhydramine (Benadryl).
Like McGovern, Everett identified epinephrine as by far the most important. In recent years, she added, there’s even been “more of a push to give epinephrine whenever anaphylaxis is suspected,” and it should always be the “first medication administered.”
In fact, the CT Statewide Emergency Medical Services Protocols explicitly states, “In anaphylaxis, epinephrine should not be delayed by taking the time to administer second-line medications such as diphenhydramine.”
Everett said steroids and antihistamines (including diphenhydramine) should only be administered when there’s “significant respiratory compromise” after already giving epinephrine.
But responders treat patients based on each individual symptom they observe, so the treatment process can vary. “Besides giving epinephrine, there really is no one ‘right’ way to treat anaphylaxis … every case is different,” Everett noted.
Katz agreed, adding that steroids are not a first-line drug. “Corticosteroids take time to build up in the body with a longer onset duration,” he explained, meaning they take effect much slower than epinephrine, which acts immediately. However, they do play an important role in overall treatment.
Because of this, and the fact that many practitioners doubt the ability of steroids to help at all during an allergic reaction, Katz considers their role in treating anaphylaxis “controversial.”
“In the EMS world, the concern is that paramedics might waste time trying to give steroids when they really need to be giving more epinephrine,” he noted.
Like Everett and Katz, McGovern made clear he believes epinephrine should always be the first treatment for anaphylaxis, and while there’s always a risk-and-reward thought process in administering any medication, the benefits of epinephrine far outweigh any potentially dangerous side effects in practically every patient, especially young, healthy ones.
“This should be our choice of medications we give: numbers one, two, and three should be epinephrine, and number four equally will be antihistamine and a steroid. That’s how important epinephrine is … it’s unbelievably safe and needs to be used more often.”
Dr. Tom Casale, the consulting physician for FARE (Food Allergy Research and Education) concurred. “There’s no good evidence that steroids help prevent biphasic reactions or recurrence of anaphylaxis.” He stressed how important it is that epinephrine is given every 5-10 minutes, especially when a patient deteriorates.
And while it’s a given that epinephrine is a life-saving intervention, most people not in healthcare don’t know how important it can be in an anaphylaxis emergency. They don’t know what symptoms call for it or when to use it, and many wouldn’t even recognize or know how to operate an epinephrine auto-injector.
I’ve noticed how big a problem this is. Recently, I asked a close friend if she’d be okay administering epinephrine to me in the event of an allergic reaction.
“Of course, I would give you epinephrine,” she said, “if I only knew how to use an auto-injector.”
That same day, I sat in health class listening to my teacher describe heart attacks and cardiac arrest. He went into detail teaching us CPR and how to use an AED in case of an emergency. It dawned on me — anaphylaxis is an “emergency,” so why aren’t severe food allergies included in the curriculum and why don’t we learn how to use an auto-injector like Epi-pen or Auvi-Q in class?
Katz and McGovern believe it’s a “numbers game.”
“From a public health perspective, cardiovascular disease is a significantly larger public health problem and kills many more people in the U.S. every year than anaphylaxis,” Katz said.
McGovern agreed. “The number of deaths from food allergy anaphylaxis are approximately 100 per year in the U.S. Here’s the competition. There are about 450,000 cardiac arrests in the US annually — 90% or about 400,000 will die.”
While it’s understandable, it’s not excusable. Every time I have a food allergy emergency, I could die if I don’t get quick and appropriate treatment. Those numbers mean nothing when an anaphylactic crisis is taking place. It would comfort me to know my friends could help me, especially since a reaction is always unprecedented.
However, what was more concerning to hear is McGovern doesn’t recall learning how to use an epinephrine auto-injector in medical school. Dr. Agnes Matczuk, an allergist and immunologist in Greenwich, expressed concern that she never learned how to use an auto-injector until immunology fellowship training. In her opinion, that’s much too late.
“I should have been trained during pediatric residency,” she stated. Even though this was many years ago, she still feels this “indicates holes in training.”
Matczuk is also extremely frustrated by the lack of epinephrine auto-injector education in public schools today. “Don’t get me started…” she began, adding she doesn’t understand why it’s not currently taught to everyone.
“There should be greater emphasis on teaching all medical professionals how to recognize and treat anaphylaxis. Doctors should be proficient at the medical student level, and EMTs should have it included in training. The same goes for nursing staff. Finally, epinephrine administration training should be included in CPR certification, as it currently is not.”
More needs to be done.
McGovern is presenting a talk about anaphylaxis on Wednesday, April 6 to WVAC members. I’m accompanying him to give my firsthand experience and knowledge. Our goal is to reinforce the importance of prioritizing epinephrine use in anaphylaxis. I cannot thank him enough for doing this, as it means so much to people like me, Adams, and Krahenbuhl who face the frightening threat of anaphylaxis from severe and complicated food allergies with every bite.
Anaphylaxis is an extremely dangerous health issue, especially if not addressed quickly and properly. I realize now how important it is to self-advocate in an emergency when you can, as well as how critical immediate (and often recurrent) epinephrine is in reversing the potentially life-threatening course of anaphylaxis.
All I hope is that now, you understand this too.