The #1 Way to Explain Food Allergies so Family Members and Others “Get It”
I have often heard other food allergy moms say that their family members or friends just don’t “get it” when it comes to their child’s food allergies. As a food allergy mom for over nineteen years, I know the number one way to communicate effectively about food allergies is by telling stories not just facts. You have to go beyond, “My child has food allergies and here’s what’s need for…”. When talking to family members, friends, caregivers, teachers and babysitters, the most effective way for them to truly “get” the seriousness of food allergies is by telling stories of your child’s and other’s experiences with food allergic reactions.
Be mindful that though someone may say they are familiar with food allergies, they may not be as educated as you think. So many people don’t know about anaphylaxis or realize that people can die from it if they don’t receive epinephrine quickly. They don’t understand that there’s no such thing as “a mild food allergy” or “a little allergic”. A person’s allergic response can change at any time.
There were many times one of my daughter’s teachers or one of her friend’s parents would tell me they were familiar with food allergies because their relative or friend had them. But when I would tell them a story of a past contact reaction my daughter had or a story of how someone died from an allergic reaction, it was surprising to them.
The power of a story creates an emotional connection and people remember stories much better than facts alone.
It’s very important to note that you need to repeatedly educate someone on food allergies. When my daughter was little, I felt like I talked about her food allergies all the time…because I did! Unless food allergies are not directly in someone’s life (either they or their child has them) it’s not top of mind. So it’s important to address your child’s food allergies with family members or friends before getting together every time. Planning ahead is on you. (I know…we wish they’d remember but they don’t always if it’s not in their every day lives). Revisit safe practices with teachers and daycare staff. Ask questions and re-educate. Talk with teachers before holiday events to address and re-educate on food allergies so your child will be safe and included.
Telling stories to educate others on food allergies is powerful & it works!
Why do I feel so strongly about telling stories for food allergy education? Because it worked so well with countless teachers from preschool through high school, parents of my daughter’s friends, family members, coaches and others throughout my daughter’s childhood.
I always share the story of my daughter’s allergic reaction from cross contact with peanuts, as well as stories of those who have passed away from an allergic reaction because they did not receive epinephrine at all or not quickly enough. Those in my child’s life would then understand the severity of food allergies and the importance of epinephrine (not Benadryl). Then we could move forward to discuss what was specifically needed to keep my daughter safe and included.
As food allergy parents it’s our job to educate others. Yes, you feel like you’re talking about your child’s food allergies all the time and it’s exhausting and stressful. But it’s necessary. (For help managing food allergy mom anxiety and stress, get the FREE guide: How to Stay Sane as a Food Allergy Mom (click here).
Talking about your child’s food allergies all the time can feel emotional
As a food allergy parent I know it’s not easy to bring up the trauma you experienced with your child’s past allergic reaction(s). Sometimes I still feel the emotion inside when I talk about my daughter’s anaphylactic reaction to peanuts when she was two (and she’s now a young adult!). It’s also heartbreaking and stressful talking about those we have lost to food allergy. But I’ve found these stories are important and necessary to effectively educate others to keep your child safe. (And if you cry in a meeting with your child’s teacher because of a story, that’s OK! I’ve been there.)
Knowledge is power, my friend. I know it’s hard to read stories of other’s allergic reactions but it’s necessary for educating yourself and others.
Be prepared with some stories of food allergic reactions
Be prepared with at least one story for each of the following situations to communicate to those in your child’s life.
1. Tell a story of why your child cannot eat, have food prepared near or be exposed to their allergens
Tell the story of your child’s worst allergic reaction, AND a story of a cross contact reaction. (This may be the same story, like ours below.)
An Example: Our Story
When my daughter, Elisabeth, was two years old, my mother-in-law and my husband’s aunt were staying with us for an extended visit. For his aunt’s birthday, we ordered an ice cream cake. There were no known eggs or peanuts in the cake. After three bites, she said, “Mommy, my tongue is itchy”. I gave her Benadryl, as we were originally trained to do at first symptom (Note: Currently, the protocol is NOT to give an antihistamine like Benadryl or Zyrtec, as it does NOT stop a severe allergic reaction (a reaction that involves mild symptoms in more than one body area = severe reaction).
Epinephrine is the only medication that can stop and reverse anaphylaxis, a severe allergic reaction. For more information on this CLICK HERE !).
Fifteen minutes after taking Benadryl, Elisabeth vomited. As a fairly new allergy mom, I had no idea that vomiting was even part of an allergic reaction or given that it was her second systemic reaction, this meant it was actually anaphylaxis. (A reaction that involves mild symptoms in more than one body area is also a severe reaction). Knowing what I know now, we absolutely should have used her epinephrine auto-injector immediately. But at the time, we called Elisabeth’s doctor who told us to give her Zyrtec, a longer lasting antihistamine, saying it was safe due to the fact that she vomited up the Benadryl. The doctor also informed us we needed to monitor Elisabeth closely for the next six hours to make sure her reaction did not progress or go into a late onset secondary reaction. It was already way past her bedtime and she was sleepy so I sat in her dark room just listening to every breath my child took, scared that her breathing would change. It was terrifying.
Luckily, Elisabeth’s allergic reaction did not progress but the fear I had while listening to her breath for hours turned into determination to bake all our cakes from then on (Read The Magic of Food Allergy Friendly Cupcakes for great cake/cupcake tips, recipes, cake decorating tricks, and strategies to help your child feel included).
The following day I contacted the place where I bought the ice cream cake and found out that the chocolate sauce used in the center of the cake had cross contact with peanuts. We were only one year into my daughter’s food allergy diagnosis and I had not heard of or considered cross contact issues. This was a hard lesson but the experience taught me that we always need to research and ask questions about potential cross contact.
2. Tell a story which explains one allergic reaction does NOT predict the severity of the next and why using epinephrine is critical
Be prepared with a story to share with “that family member” who doesn’t take your child’s food allergies seriously because your child “only had some hives once” as an allergic reaction. In order for others to take food allergies seriously, they need to understand that food allergies are unpredictable. One allergic reaction does not predict the next. A story must also explain why your child’s epinephrine auto-injector needs to be with them at all times and used quickly if needed.
To explain the seriousness of a food allergy to my daughters’ teachers (and others), as well as why it’s important to use epinephrine quickly, I would tell the story of BJ Hom. BJ lost his life to anaphylaxis because of his peanut allergy. BJ only had mild symptoms to peanuts previously so he didn’t carry epinephrine.
The Hom family went on vacation to Los Cabos, Mexico, in 2008 to celebrate their son BJ’s 18th birthday and graduation from high school. On the first night, the family ate dinner at the resort and then went for a walk. After BJ complained of a sore throat, his dad bought him cough drops at the resort gift shop. BJ stayed with his mother while his dad was at the arcade with BJ’s siblings. Someone called his dad to the lobby telling him his son had turned ill. BJ had collapsed, his lips were blue and he was gasping for air. BJ died that night from an anaphylactic reaction after accidental exposure to peanuts that were in a chocolate mousse dessert at the resort restaurant.
The Hom family knew he was allergic and avoided peanuts, but BJ’s past reactions were more mild. They didn’t carry an epinephrine auto-injector because he never had a severe allergic reaction in the past. They had treated BJ’s past reactions, which typically consisted of hives and swelling, with Benadryl.
The loss of BJ still stays with me. I have told his story many times to help keep my daughter safe. I’m grateful to BJ’s dad who shared his story (link above).
BJ taught us that food allergies should always be taken seriously regardless of a previously mild reaction and that Benadryl does not stop or reverse anaphylaxis. Only Epinephrine can stop and reverse anaphylaxis and 2 epinephrine auto-injectors should be with a food allergic person at all times. (see link above: “the importance of epinephrine (not Benadryl)”)
Teach your child with food allergies (and those who care for them) the mantra I taught my daughter, “no epi, no eating”. And if we forget her auto-injector we go back for it. She has learned and practiced this safely and lives a full life. It can be done.
Share other’s stories of food allergic reactions
If your child has only had a minor reaction from a food allergy, then you need to share other’s stories to educate. Feel free to share the story of Elisabeth’s allergic reaction to educate others on cross contact exposure.
Also, use stories of those we have lost to food allergies so people in your child’s life understand the seriousness of a food allergy. Learn and share.
Using the power of a story is the most effective tool you have to explain food allergies to the people in your child’s life so they truly “get it” and help keep your child safe.
I know this post was a heavy read. So try to take a moment to decompress. To receive perspective, guidance and strategies to reduce food allergy mom anxiety, get my FREE guide, How to Stay Sane as a Food Allergy Mom (click here to get it) You’ll be glad you did!
To learn the most important things you need to know to care for a child with food allergies, get Food Allergy Education Essentials (click here to get the FREE pdf in your inbox- and don’t worry, I will NEVER share your email address – I hate that too!)
Hi, I’m Debra Bloom and I’ve been a food allergy mom for over 19 years. I’m the founder of Food Allergy Parenting, creator of The Safe Snack Guide, and co-founder of Snack Safely. I’m a food allergy parenting coach passionate about teaching you how to keep your child with food allergies safe and included from tot through teen while living a full life. Sign up for my newsletter to get guidance and support right in your inbox! (I’ll never share your email and no spamming – I can’t stand that either!)
Go from fear to confidence!! – get the guidebook, How to Keep Your Child With Food Allergies Safe & Included at Every Age. It’s what I wish the allergist would have handed me many years ago to learn how to navigate raising my daughter with allergies to peanuts and eggs. But doctors only diagnose disease- they don’t help with lifestyle. I learned throughout my daughter’s childhood working behind the scenes to keep her safe and included so she could do everything. I wrote How to Keep Your Child with Food Allergies Safe & Included at Every Age in guidebook form rather than book form because I didn’t want to fill it with fluff. I do tell stories to help you learn but I wanted you to have a clear readable “How to” that you could reference as needed. It’s only available HERE, not on Amazon, because I want to be able to send you updates (you’ll get updates when food labeling laws change and new epinephrine delivery devices come on the market).
How to Keep Your Child With Food Allergies Safe & Included at Every Age is a practical guidebook to help you go from fear to confidence while raising your child with food allergies. I share food allergy parenting education, lived knowledge and heart. Currently discounted for the holidays! To order- CLICK HERE!
