Guest Entry: Nona Narvaez, Executive Director of Anaphylaxis and Food Allergy Association of Minnesota
Recently, Nona’s son experienced an anaphylactic reaction 2-hours away from their St. Paul home. Read my dear friend’s account of the episode and learn from her message of “Do Not Hesitate. “
Max had an anaphylactic reaction after eating at a restaurant in Rochester. He is fine now, but last week he was tired from being kept in ER until 1 a.m. and being on a steroid and diphenhydramine for a few days, and uninterested in socializing at a couple of different events (he wanted to stay close to us parents).
We ate at a vegan restaurant – meaning that it was free of milk and egg and beef and pork ingredients (four of his allergies. He is also allergic to some treenuts). The restaurant was well-versed in ingredient cross-contact issues. Their deli items are very well labeled, the staff understood the severity of Max’s allergies, and the restaurant had in place extensive protocols for keeping allergens apart. He ate a falafel sandwich, tofu salad (like eggless egg salad), french fries, a bite of Robby’s pancake, and a chick-pea salad. He was in heaven eating all these wonderful dishes without a care, and it was delightful to watch him enjoy a full, hearty restaurant meal since he clearly cannot do that elsewhere.
Nevertheless, shortly after leaving the restaurant Max started having itchy eyes and a runny nose during our drive 30 miles to a town south of Rochester to meet with a camp foodservice director to gather information to determine whether he could safely attend camp there with his confirmation classmates. We didn’t observe his symptoms until we all got out of the car, but assumed that he was coming down with a cold or – given that it is springtime – suddenly developing environmental allergies like hay fever .
He looked worse as the minutes went on, and developed a bright red face in what is called a butterfly pattern across the cheeks and nose. After going to the bathroom, he lay down on a bench briefly, and when asked how he was feeling said his stomach hurt. That was the first point I thought he may be having an allergic reaction. He excused himself to go back to the bathroom and I asked Jeff (my husband/his dad) to follow him in case something was wrong. During the few minutes he was gone, I had an overpowering feeling that something serious was happening, so much so that I couldn’t concentrate or focus on the written words in front of me. I excused myself from the meeting, saying I needed to check on Max: I knocked on the bathroom door and Jeff said that Max just threw up. Later we found out that his voice (throat) was affected.
At that point I said “give him epi”. Jeff thought Max was merely sick with some bug and thought we’d wait and observe, but I reminded him of the recommendations of allergists to not wait and see; Max’s care plan of giving epinephrine (“epi”) if 2 bodily systems are reacting (in this case gastrointestinal and eyes/nose/facial skin); my many public lectures that include “don’t hesitate to give epi”; and the knowledge that if epi were administered unnecessarily, it would cause no harm. Jeff injected him and it went right through his denim jeans as it is supposed to do. Within 60-90 seconds he looked remarkably better with the redness disappearing and nasal symptoms subsiding, and within 2 minutes looked almost back to normal and said he felt much better.
We then discussed which was faster – waiting 15 minutes for an ambulance or driving him to the hospital ourselves with our 2 additional epinephrine autoinjectors to use if needed. We decided that 2 autoinjectors would buy us 20-40 minutes but an ambulance would have additional injectors in case his symptoms returned and 2 injectors were not enough for the duration of the drive or for a resurgence of severe symptoms. *(Two friends have pointed out that I should mention that MN ambulances have epinephrine on all vehicles because of AFAA spearheaded legislation in 2002.)
The Spring Valley ambulance arrived about 10-15 minutes later, and transported Max to Mayo Clinic’s St. Mary’s Hospital in Rochester. There they observed him until 1 a.m. – fearing a biphasic reaction – giving him a steroid, antacid, and diphenhydramine. He continued to improve, and seemed almost fine. After he was released, we purchased one of his medications, returned to the hotel, fed him and Robby (both were extremely hungry), and finally fell asleep at about 2:30 a.m. He slept well and looked totally fine by morning.
We returned to the restaurant the next day to tell them what happened, in hopes that if a mistake was made that they could learn from that and avert a similar occurrence in another patron. I did not know what to expect when approaching the restaurant: as a parent, I found it hard to walk back into the restaurant. As a member of the FDA Food Code MN Rule Revision Committee I felt compelled to share with them what happened. What should patrons and restaurants do when a suspected allergic reaction occurs?
The restaurant was very sympathetic and offered to pay for the ambulance and hospital bill; we spoke with one of the cooks, the managers, and the owner, looked at recipes – all trying to figure out what might have happened. We don’t know whether cross contact occurred at the restaurant, at the manufacturing level, or whether Max is now allergic to another ingredient (possibly fava beans). We are now doing the detective work to shed light on why the reaction happened, but we may never know.
Max is an easy-going kid, but he did admit that he hesitated to open a box of Enjoy Life cookies – a brand known for is dedicated facilities and entire line of products free from the major 8 allergens and then some – because the packaging design had changed. He also said that he will stick to what he knows, meaning he may not want to try eating in a restaurant again for many years. We’ve given Max more freedom as he has gotten older (he is now 12), and we want him to live as normally as possible and without fear. A few days after the reaction he acted very quiet at a school patrol picnic where he kept to himself instead of playing catch or walking around with classmates, going on rides, playing minigolf – all things he had eagerly talked about last week, but in more recent days seems to be fine – and at a church event stayed in a separate room eating his safe snack while the congregation ate cake in another. In yet another event last week he tried to play catch with his classmates, but didn’t want to touch the football because he reacts tactilely (by touch) and the classmates had touched the football after indulging in ice cream sandwiches.
Jeff said that the experience taught him that there is no need to hesitate and that it is easy to administer an epinephrine autoinjector. Max has learned that it doesn’t hurt and that he should give it to himself if ever he were in a similar circumstance. I learned that the ambulance Basic Level Service in southern Minnesota works extraordinarily well, with an Advanced Level Service backup system in place. Robby was nonchalant through the whole thing – partly because of his age, his ADHD, and because he went through a similar experience as a kindergartener (receiving epi from his teacher). Nonetheless, we all felt the situation was surreal given that I had only hours before presented a lecture on the topic of food allergies and anaphylaxis at the Rochester Food Allergy Resource Fair in place of a Mayo Clinic allergist who canceled due to illness.
We are so, so, so very thankful for Max coming through this episode safe and sound, and are reminded of the importance of the education, the safety procedures we teach, and the efforts we make to have safe events & social situations, and safety policies in place Minnesota. And we just want to hug him over and over!
This experience hammers home the adage that the “Personal is Political (and the Political is Personal)”. Back in 2001 – within weeks of starting the first support group in Minnesota (the Anaphylaxis and Food Allergy Association of MN or AFAA) – I approached my mentor and state legislator, and wrote a bill to get epinephrine into all ambulances in Minnesota. And although intellectually I knew this legislation would benefit the allergic individuals living in the rural two-thirds of the state relying on Basic Level Service ambulances, little did I realize my son would someday ride in one of those very ambulances. More than a dozen lives have been saved by this hard-won law since it passed.
Our organization’s motto is “Take the Fear Out of Food Allergies” – and through education, advocacy, and support we create safe events, areas, and policies. My husband who administered the epinephrine, my son who experienced the reaction and injection (and tells everyone “It didn’t hurt!”), and all those who know us now feel more empowered to act quickly. Fear is reduced when we know and practice what to do – and when we hear another family did the same thing. I followed the lessons I teach when I lecture, and because of that “It turned out well” as Max says. Be prepared, be sensible, don’t hesitate, live life fully, and appreciate the time you have with those around you.
Nona Narvaez, Founder and Executive Director of AFAA