Editorial: Speak Up Because No One Wants To Read A Child’s Obituary

Take 2 along everywhere... every time

By now you’ve probably read the Allergic Living article about two families that have filed lawsuits after losing their sons to anaphylaxis. The details are horrific, as they always are when a child is taken by allergic reactions.

In one case, a boy of 16 from Minnesota died from an anaphylactic reaction when it turned out the pancake he was eating at a restaurant was contaminated with milk. The family did not have his auto-injectors on-hand and had to rush him home, but by then it was too late.

In the other, an 11 year old Alabama boy died from a severe reaction to a supermarket cookie. Though an employee assured the family that the cookie contained no tree nuts, it did in fact contain walnuts. His mother administered Benadryl once the symptoms presented themselves and at some point afterward administered his auto-injector, but despite being airlifted to the hospital he could not be resuscitated.

These deaths are every parent’s nightmare, especially for those of us who are part of the community of kids with food allergies. But if there is anything to be redeemed from these tragedies, it is what can be learned to prevent them from happening to other children.

With no disrespect or judgement meant for the grieving parents of these boys, and knowing nothing more about the circumstances that lead to their reactions, let’s remind ourselves of what we can do to prevent occurrences similar to these in the future.

Take 2 Auto-Injectors Along Everywhere, Every Time

Our readers are no doubt sick of hearing us repeat it over and over again, but this is one of the most important things you can do to safeguard a child with severe food allergies: Make sure they always have two auto-injectors on hand wherever they go, no exceptions. If they’re old enough to self-carry, drill it into their heads to always take them along. If they’re of school age, make sure the school nurse or designee has their prescribed auto-injectors on-hand, that there’s an emergency action plan in place, and everyone knows their role in an emergency and is trained.

Parents and siblings should carry as well so there is a network of people surrounding the child who have immediate access to epinephrine, the only medication indicated for use during an anaphylactic reaction. And don’t be shy about training your child’s friends to recognize the symptoms and how to properly administer your child’s auto-injector.

We know that epinephrine is expensive, especially for those without prescription coverage (and even for those with coverage.) The major pharmaceutical companies with epinephrine offerings often have “zero copay” programs and other ways to save on auto-injectors. FARE has a great resource for finding out more.

Don’t Waste Time on Benadryl When Epinephrine is Indicated

The time to act is short when anaphylaxis sets in and antihistamines like Benedryl can mask the symptoms and delay the administration of life-saving epinephrine. Contact your child’s allergist and discuss when it is appropriate to administer antihistamines and when you should skip directly to epinephrine. Make sure this information is disseminated to everyone: care takers, siblings, family, school, friends… everyone. FARE’s Emergency Action Plan Template can help codify and share this information.

Don’t Rely on Store Personnel for Allergen Information

No matter how well intentioned or well informed store personnel are, they simply cannot be relied upon to provide advice regarding the allergen content of their products. They may be relying on personal experiences with the product (“I didn’t taste nuts when I tried it”) or on the product’s label, which does not provide reliable allergen cross-contact information.

The determination whether or not a product is safe must be yours by checking the label and calling the manufacturer to understand their manufacturing processes regarding your child’s allergens of concern. (Allergence, our free screening service, provides information entered directly by the manufacturer regarding the processing of 11 allergens for each product. Even so, we still recommend you contact the manufacturer to confirm all details.)

Avoid Unpackaged Foods

Never give your allergic child an unpackaged food unless it comes from your own home or a reliable source. That cookie in the bin at the supermarket or that cone at the ice cream shop may contain your child’s allergen as an ingredient or have been contaminated by other products, serving utensils or unwashed hands.

Avoid Restaurants That Prepare Dishes with Your Child’s Allergen

The restaurant’s chef, wait staff and management may all have genuine concern for your child’s allergy, but do they know the details of how to prevent cross contamination in the kitchen? Do they understand that even an infinitesimally small quantity of an allergen can trigger anaphylaxis? Despite their best intentions, is it even possible for their grill to be sanitized or their woks, tongs, ladles, trays, pots, pans, whisks, counter tops, etc to be cleaned sufficiently?

Before you expose your child, be sure you understand the processes involved from the selection of individual ingredients through preparation and serving. In all but very few cases where the staff has been trained and the kitchen laid out appropriately, you should avoid food establishments that use ingredients that may contain your child’s allergens.

No Judgement. No Lectures. Just Education.

We are not passing judgement here nor are we in the business of lecturing people how to take care of their children given the enormous responsibility we all face.

That said, we are all responsible for doing what we can to prevent another child’s obituary from appearing in the news. We must all be sure to actively pass on our collective experiences to prevent the next avoidable occurrence of a child succumbing to anaphylaxis, whether it be ours or a neighbor’s.

Please take a few minutes to contact your family members and friends – anyone coping with a child’s food allergies – and discuss the basics of keeping them safe.

Don’t be afraid to speak up and share your personal experiences and trusted resources with them, and don’t concern yourself with appearing to be overbearing. That 3 minute call, that e-mail, that instant message could very well save a child’s life. And let’s face it… no one wants to read a child’s obituary.

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2 COMMENTS

  1. Great post. Time is the key and being prepared. My heart to the parents, as you are not alone. We will need to keep to the exact facts in this post. They are exceptionally written and I agree 110%.

    Time is the key and EPI FIRST…be prepared.

    Love you my son, Joseph so very much…

  2. Thank you for this thoughtful and hopefully thought provoking post. As parents of food allergic children we all feel deeply the effects of the loss of young lives to anaphylaxis. There are some very simple truths that you lay out well here. Nothing is ever 100% but vigilance is key.

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