The first week of this new year injected lifesaving gratitude. My 16-year-old daughter experienced anaphylaxis, a severe allergic reaction to something she ate during Sunday dinner. Epi first, Epi fast, call 911 is the mantra of what to do in case of anaphylaxis. I am eternally grateful we were both brave enough and quick to follow the mantra in this case. We have experienced other scares on this 15-year journey. But this reaction was different and for the first time I had to use her epinephrine auto-injector (Auvi-Q).
After a week of processing what happened, along with continued sleeplessness, I am more deeply empathetic on why “what to do” and “how to recognize anaphylaxis” can be so confusing. The frenzy of fear combined with changing symptoms makes a judgment call very difficult. The paramedics, hospital ER staff, and allergist all say we did the right thing. I have learned every reaction can be different. I wanted to share the events of what happened, what made this reaction and our response different.
Timing: About 30 minutes after dinner, my daughter noticed hives, a swollen eye and it started itching. My first reaction was “let me see – where is the Benadryl or Zyrtec?” Then immediately next, she clutched her neck and said, “Mommy mommy, my throat.” Two symptoms. Throat and the skin. More than one including a severe one, the throat, signals time for epinephrine. That is all I could recall from doctor visits and ongoing education. That was enough for me to get her Auvi-Q.
Symptoms and body language: The look in her eyes and what appeared almost like panting while trying to swallow in order to catch a breath, made me see this is more than a reaction of hives. It was more than an itchy throat. I told her okay we are going to use your epipen.
The Injection: The Auvi-Q voice narration walked through the steps once I pulled the tab, and how long to hold in the outer thigh. She looked at me and said, ”Did you do it?” I said yes, while calling 911. I thought to myself, the needle isn’t so bad after all.
The 911 call: I told the 911 operator she was having an allergic reaction and I just gave her epinephrine. She assured me they were on the way and to keep talking to her. We grabbed her second Auvi-Q and headed for the door to meet the paramedics. I kept talking and praying to God out loud. As we waited, she said it still felt like her throat was closing, her heart is now racing (epinephrine will also do that), and she is still panting. But she was courageously calm as we could hear the sirens approach.
Ambulance ride: They arrived quickly and started monitoring her heart and oxygen. They started the lines, including in case for more epinephrine. She was quiet and calm, answered their questions of how she was feeling. They asked me what time I gave her epinephrine and what happened. Still complaining of her throat, as we got closer to the ER, the EMT administered more epinephrine. I am so thankful they had it on board. Not all paramedics carry epinephrine onboard ambulances in our communities. “Always carry two” is another mantra echoed in my head.
ER visit: In the midst of this COVID surge, the pediatric ER staff was highly responsive. Her symptoms subsided but she often complained of feeling a little dizzy and nausea. She was treated with steroids, antihistamines, something to settle her stomach and monitored for a few hours. Discharged with continued meds and monitoring at home for three days following was just as scary. There is still a risk of biphasic reaction – rebound, or secondary – whatever you want to call it, for the next 72 hours, which made those nights sleepless. And still does frankly.
The next steps are to determine what caused the reaction. Our dinner included one new boxed item. We are testing the ingredients of EVERYTHING she ate likely via skin prick this week with her allergist. More to come on that in another post with an update.
Over the years, my daughter has been blood tested, skin pricked, food challenged, and everything else it seems, while also managing her asthma. As I reflect with gratitude, I recognize there is still the privilege of healthcare access that comes with being properly diagnosed on what makes you at risk for anaphylaxis.
Every person does not have equal healthcare access. The disparities do exist for people who look like me and for those who only make certain levels of income. Despite any experiences of red flag allergic reactions (like hives or itchiness), there are many people who lack access to allergists for proper diagnosis, testing and for affordable cost coverage of having epinephrine nearby, or at school, any place that provides care for our children and even our workplaces.
Recently, a recent practice update published in April in the Journal of Allergy and Clinical Immunology shared how clinicians diagnose anaphylaxis, but I think the visuals and guidance can be helpful for all of us in this article. FARE’s Food Allergy and Anaphylaxis Emergency Care plan is a useful cheat sheet to keep handy.
If you are ever in doubt during an allergic reaction and still uncertain if it is anaphylaxis, remember epinephrine cannot hurt you. Anything with a needle can be intimidating. My teen confirmed in the frenzy, it wasn’t that bad. I am also confident epinephrine auto-injectors will become more convenient to use in their designs. Many innovations are in development, like the Omniject™, created by Alerje, which is an auto-injector that adheres to a phone case and can also trigger emergency notification alerts when activated.
The bottom line lesson is to carry two epinephrine auto-injectors and to Epi first, epi fast, and call 911.