By David Stukus, MD
I read through the documentation from the phone call in disbelief. The mother of one of my food allergy patients had called and spoken to my nurse the night before. She was panicking after a call from her 3-year-old milk-allergic son’s daycare. He had accidentally eaten a piece of cheese and immediately developed red, itchy hives on his body, then threw up twice. They had injectable epinephrine at the school but were afraid to use it. Mom raced to the school and immediately put him in the car to drive to the nearest emergency room, located 30 minutes away! That’s right—she didn’t inject him either!
The frantic call came en route while driving her son who was experiencing anaphylaxis from known food ingestion, to an emergency room. Our nurse directed her to pull over immediately, call 911 and request an Emergency Medical Service team that had injectable epinephrine in their ambulance. She did, EMS arrived, and they still did not administer epinephrine. Their reasoning? Well, by that point, the vomiting had stopped and he didn’t have any breathing difficulty, although he was still covered in hives.
Long story short: he was transported to the emergency department and did fine. I spoke with mom the next day and she was in tears, knowing that she had the understanding and ability to administer epinephrine and make her son feel better almost immediately. So why didn’t she? Like so many others, she was afraid of the unknown. No one in the family had ever administered epinephrine before. Her mind went through a familiar cascade of doubt: she was afraid of the needle, what the medicine might do to her son, and just couldn’t bring herself to give him the injection she had been instructed to do.
This is an extreme example of a very common story. Many published studies have documented the lack of use of self-injectable epinephrine by adults and children experiencing anaphylaxis. Recent studies have also highlighted knowledge deficits from physicians in recognizing anaphylaxis and indications for using epinephrine. The example with my own patient made me really start to think about where these gaps exist and what I can do better to get them past that paralysis.
Every patient with food allergies should be prescribed self-injectable epinephrine and have it available at all times. People with food allergies can experience immediate-onset, even life-threatening or fatal reactions, with ingestion of even very small amounts of their allergen. Treatment relies on strict avoidance of their foods but accidents happen, particularly in the school setting.
Epinephrine, also known as adrenaline, is a chemical that we all have inside our bodies. This is what gets ramped up during our ‘fight or flight’ response and helps our bodies increase energy and strength by increasing blood flow to vital organs through increased heart rate and blood pressure. When used for treatment of a severe allergic reaction, epinephrine effectively reverses the symptoms in all organ systems, including hives and swelling (skin), vomiting (gastrointestinal), wheezing (respiratory), and loss of consciousness (blood vessels). Almost every case of fatal anaphylaxis is hallmarked by delayed, or lack of, administration of epinephrine.
Side effects of epinephrine are negligible when administered intramuscularly in the doses included in an autoinjector. However, many people, physicians included, mistake autoinjectors with that of more powerful epinephrine administered intravenously, which can cause significant side effects and potential harm. This is, quite simply, a common misconception not founded by evidence.
So where does the disconnect occur? For one, not every person with life-threatening food allergy receives the proper diagnosis or prescription for an auto-injector. They may never think to follow up with a physician after a reaction in the first place after symptoms subside. Unfortunately, in the event that they do follow up, some physicians may lack the understanding to properly diagnosis food allergies or recognize risk of future reaction.
Even when a physician prescribes the device, he may not provide the proper education regarding indications and use. A recent study in the State of Texas showed that a majority of patients used the injectors incorrectly! It’s not enough to merely tell patients to pick up epinephrine at the pharmacy and hand them a brochure. They need to a thorough understanding of avoidance, the risks of cross contamination, the signs and symptoms of anaphylaxis, exactly when and how to use epinephrine. There are currently 3 different auto-injectors on market, and all have significant differences. Patients should be able to point to the target area on the thigh and drill to simulate the motion and pressure involved.
Like pilots, they need to keep up their mental skills as well as their physical ones. They often become complacent and comfortable that they can merely avoid their food. Many people also tend to be cavalier about the dangers of cross contamination, while properly trained families do much better.
Autoinjectors expire within about 12 months and need to be replaced. The cost is not nominal, exceeding $100 per autoinjector even with insurance, depending on the plans, and without a prescription much more. I’ve had many patients tell me that they either cannot afford it, or choose not to pay for a prescription that they have never had to use. Thankfully, the manufacturers recognize this and have patient assistance programs in place for those in need. But this entails having them recognize the need and for the medical provider to ask about availability in the first place.
Apart from that there are all the complications of mass manufacturing and marketing a fairly delicate, time-sensitive product. From manufacturer to distributor to pharmacist, no one wants to get stuck holding inventory they cannot sell, and will offload their products on customers who don’t inspect the sell-by dates carefully.
So what happened with my patient? Where did I go wrong? I’ve known them for over two years and we have reviewed all of the important information many times, including practice with a training device. It never dawned on me that our 30-minute visit every 6 months or once a year might not actually prepare them for real life. For people who have experienced anaphylaxis, they understand how rapid and severe symptoms can become. But for others who have not experienced anaphylaxis but are still at risk for future reactions, Even the best training remains an abstraction.
During our follow up conversation/debriefing, I asked my patient’s mother “How could I have prepared you any better?” She replied by saying that there is nothing I could have done to prepare her for the panic and fear of that moment. Then she told me that now, with this vivid image forever locked into her memory, that she will know exactly what to do if this ever happens again.
Still, the caregivers, whether day care workers or parents, are only part of the problem. What about those EMS personnel? What about the emergency rooms, where the doctors operate by a different set of protocols and define anaphylaxis differently?
While much food-allergy treatment relies on self-management, medical personnel are a vital part of anaphylaxis treatment, and they often underperform as well. EMS teams may not even have autoinjectors with them at the time of initial response. Even when they do, they are subject to the same misconceptions about anaphylaxis as our patients and may administer less effective, potentially harmful antihistamines in place of epinephrine. In addition, there are many examples of EMS personnel declining to transport to the nearest emergency room someone who has already administered epinephrine. This highlights another huge misconception about emergency room management, which is recommended every time injectable epinephrine is used. The point of these visits in not due to any dangers of epinephrine, but to monitor any return of symptoms, which occur in up to 20% of patients according to some studies.
Personal experience and published reports both indicate that emergency room doctors underuse epinephrine as well. They define anaphylaxis differently than allergists do, have similar unfounded concerns about side effects from epinephrine to many patents, and rely excessively on antihistamines and corticosteroids. Fortunately, in late 2014 new guidelines were published specifically for emergency room physicians to help bridge this gap, but there’s bound to be a delay in implementing them. According to the new guidelines, there is virtually no reason not to use epinephrine on a patient believed to be suffering a severe allergic reaction.
As you can see, underuse of epinephrine is a challenge at many levels and involves patients, primary care providers, emergency responders, and emergency room physicians. The job of educating them all is far from over.
David Stukus, MD, is board certified in Allergy/Immunology and is an Assistant Professor of Pediatrics at Nationwide Children’s Hospital and The Ohio State University in Columbus, Ohio. His clinical and research interests focus on asthma and food allergies, especially improving education and adherence for patients and families. As part of his research, Dr. Stukus has created novel technology and educational tools using mobile health apps to improve the care of patients, for which he was recognized with the Nationwide Children’s Hospital Department of Pediatrics Junior Faculty Award in November 2013. Dr. Stukus has been an active member of the medical advisory team for Kids with Food Allergies since 2009 and was elected to the Board of Directors for the Asthma and Allergy Foundation of America in 2014. Lastly, Dr. Stukus actively engages with food allergy support groups and participates in social media on twitter through @AllergyKidsDoc.
Gina Lee says
Thank you, Dr. Stukus, for highlighting this important issue and sharing your perspective. This is one of my greatest concerns as a food allergy educator. Research shows us time and again that people are afraid to use epinephrine. When I talk to others, I will ask, “If the epinephrine were in the form of an oral medication, would you have used it?” Most often, the answer is, “yes”. So, we need to help people get over the fear of the needle. We also need to help them feel confident that they are making the right choice by using it immediately when there are symptoms of anaphylaxis. I find that people tend to second guess themselves.
We experienced our very first epipen injection with our daughter on Christmas Eve. We’ve had several instances like the story you described above, where we weren’t sure and should have used it, but didn’t. In our recent case, there was no doubt with her throat burning and vomiting.
However, the EMS said they didn’t need to transport her to the ER since her vitals were fine. We were only 5 minutes away, so we drove her ourselves, but I won’t allow that in the future, knowing now how children can metabolize the adrenaline faster and she could have had a secondary reaction in the car.
The ER doctor was also misinformed about anaphylaxis, saying that because her breathing was fine, it wasn’t something we should be worried over. She reacted within 5 minutes of eating something cross-contaminated (we never figured out if it was to eggs or nuts), and he also told us that she wouldn’t react that fast.
I was floored by the misinformation this doctor had. I’ve been a parent of a class VI food allergy child for almost 7 years and I had more knowledge of the situation than an ER doctor. With the rise in allergies and the severity of allergies, ALL doctors need some serious retraining on how to handle a reaction. It doesn’t reassure me when I go to a professional in an emergency situation and I have more knowledge than them!
Mary Moody says
i am an adult who experiences hives and angeodiema at least three times a month not being able to identify what food allergen is causing a reaction. Sometimes I get the hives on my lips and eyes really bad, and sometimes it starts to swell into my nostril which makes it slightly hard to breath out of one side of my nose. I take children’s liquid benedryl and Zyrtec with a Zantac. More often than not this reaction is very uncomfortable and when seen in the ER I’m am usually percribed a steroid which helps but the swelling in my lips and eyes and ears makes it impossible to be seen in public for 4 days. This is making life difficult right now. Should I be using my auto injector as well to help with this. I have heard that if this reaction gets even worse while I am sleeping that I could die. Any information would help. Thanks in advance!
Thank you for writing this article, Dr. Stukus.
You wrote near the end:
“..Fortunately, in late 2014 new guidelines were published specifically for emergency room physicians to help bridge this gap, but there’s bound to be a delay in implementing them…”
I wonder if you’ll consider that there may be an intentional delay, caused by a sort of backlash against allergists by ED docs?
See these two posts that gained not an insignificant amount of attention:
One of the authors of the latter article displays surprisingly hostile language on the topic elsewhere in her writing.
As the number of food allergy diagnoses rise, I sometimes worry about “disease fatigue” in the general public. It’s even more concerning when one has to take into account the objectivity of the ED doctor.
Jgb Webb says
Extremely enlightening. Very interesting that sx return in 20% of cases & that this is the reason to get to ER. And it’s so important for those who don’t deal with food allergies personally to become more aware
Sorry, but we do not give medical advice.
FA MOM says
Thank you for writing the article. Add poison control to the list of uneducated staff regarding food allergy reactions. Christmas eve was also our first reaction and our immediate thought was food poisoning. Poison control despite telling all the symptoms thought he was okay because he was vomiting and getting out of his system. His face was swollen and he had hives.
We moms know that the schools, er doctors and ambulance drivers are uneducated. We have lived this for years. This doesn’t help our already high levels of anxiety. Please also add to the list of uneducated staff, food services at the hospital and other offices such as blood testing where they insist on trying to give candy with nuts in it to the kids after getting blood drawn.
How can we work on educating them? Who’s responsibility is it? Head of Allergy, FARE, Allergists, etc. ??? It needs to be done and moms are not in the position to do it as we are seen as the crazy over reactive parents due to the lack of education from all the medical staff.
This article is very accurate on how I have felt
as a parent of a food allergy child. I have not
given the Epi pen when I should have and emergency
Rooms have given me bad information. We
need to fix these problems.
Sharon Wong says
Giving epi at the right time is so important and sharing this story along with reasons why timely use of epi could save lives. I know that I’ve been paralyzed with fear, epi in one hand and action plan in the other. It’s the stories that touch our hearts and give us courage to act quickly. Thank you, Dr. Stukus and AAC!