My daughter Brooke grew up owning food allergies, anaphylaxis, the whole bit. Yes, I was scared at first — terrified, really. She was a baby! With asthma,
rhinitis, eczema and reflux disease! Sick and malnourished!
“They” said food allergies in infants, especially breastfed ones, simply were not possible. For heaven’s sake, I knew something was wrong and she needed help!
“Try thickened cream of rice cereal but use water or breast milk instead of formula,” we were told… “wild buffalo instead of farm-raised beef”… “rabbit instead of chicken.” The thin and skimpy “avoid-this-use-that” food list felt more like a pacifier than any real help.
Back then in Brooke’s and my world, it was trial by fire (and blender), an allergen guessing game. Some allergen encounters required emergency treatment, others smoldered unnoticed until her IgE bucket overflowed. Had no idea how much I didn’t know then, even when I was looking right at it.
We always carried a “ditch bag” with medications, daily symptom diary, peak flow meter, holding chamber. Always kept gas in the car and snacks and games at the ready for unexpected emergency trips to the doctor’s office or hospital.
Always on alert…
It was exhausting.
For me, the hard part wasn’t the diagnosis — which, by the way, unfolded over time — it was what to do about it and how to hold onto my sanity in the meantime. With time, experience, accurate information, a prevention-and-treatment strategy, follow-up visits with the allergist and periodic retesting, we “got the hang of it,” as Brooke used to say.
I’d search for tasty recipes Brooke and her brothers could eat (now, cookbooks make it easy). Learned to bake bread and cook primarily with whole foods (especially those we grew in the garden) and eventually discovered time-saving and delicious ways to manage the school lunch assembly line each morning.
As skill and confidence replaced isolation and fear, the roller-coaster symptoms, attacks, episodes, anxieties — you name it — evened out, for the most part. We knew what to do and we did it, and even found humor when we least expected it. Our worry days weren’t over, but they no longer overwhelmed us.
I didn’t separate asthma, eczema, reflux, allergies and food allergies because at some level, I knew they were all intertwined. Teasing out symptoms’ sources meant digging deeper than the obvious and getting facts straight, and I wanted to help other families do it too.
So in 1985, I started writing AANMA’s flagship newsletter, The MA Report, reaching out to what I thought were a few other families like mine and hoping to build onto the wheel we’d started turning, rather than reinvent it. After the first issue, a single news story was published about The MA Report, Brooke, and our family; within days, more than 300 people responded. Then “The Today Show,” “Good Morning America,” Parade Magazine and other national media featured this practical, medically accurate and timely “little publication that could.”
And 5,000 letters, donations and memberships poured in. They were from people wanting practical solutions — people who, like my family, were not content to live with their fears or symptoms when there was a better way. These were the same people who remember the days before the first President Bush signed the Nutrition Labeling and Education Act in 1990; before schools recognized that students with asthma and/or allergies required and qualified for Individual Health Plans and reasonable accommodation of their needs; before food companies routinely manufactured a wide variety of dairy-, egg- and peanut-free and other alternative foods; before high-tech epinephrine auto-injectors and way, way before accurate and informative testing and national asthma and food allergy guidelines.
These people helped AANMA lead the charge in ensuring students across the nation have the right to carry and self-administer asthma inhalers and anaphylaxis epinephrine auto-injectors. The resulting ASTHMA Act was signed into law by the second President Bush! It’s taken decades to get where we are.
The Next Generation
Looking at a recent survey of AANMA members, many of whom date back to those early days way back when, I see the kids are now grown and many have their own children with asthma and/or food allergies. And this next generation of parents seems to take things more in stride because they know what to do. It’s a wonderful feeling!
I don’t know how many children and adults suffered in silence with food allergies back in those days, much less how many didn’t make it. The latest research shows incidence of allergies and asthma is on the rise. And although today’s food allergy families have no way of comparing the “dark ages” back then with now, they reap the rewards of new understanding and treatment.
Along with all the positives, however, we’ve also seen a sharp increase in misinformation, hurtful division in communities and product opportunism in the name of “safety” or “peanut-free.” We’ve seen friendships destroyed over peanut butter sandwiches!
The conversation has strayed so far from the facts about food allergies that in some ways, I think it is more difficult for children today than it was when Brooke was little! Now these kids and their families bear not only the weight of their health issues but the confusion of what to eat, where it’s safe to sit and who it’s okay to be friends with.
The facts are relatively straightforward: Kids with food allergies should avoid exposures to known allergens. But sure as rain, they’ll have accidental exposures. Since it’s impossible to predict the severity of future episodes based on previous experience, kids and their parents, teachers and others should know how to identify a life-threatening anaphylactic reaction and be prepared to treat it.
Epinephrine is the first line of treatment. School-age children at high risk for anaphylaxis should carry or have immediate access to two epinephrine auto-injectors at all times. Why two? Up to 35 percent of anaphylactic reactions require a second dose. And if a mistake happens with the first dose, a second is available.
Epinephrine is the ONLY medication that can prevent anaphylactic shock and death, but only if given early enough. It works within moments, whereas antihistamines such as Benadryl® take up to an hour and treat only histamine, one small part of the body’s total reaction to mediate an allergen.
Brooke grew up in the days when conventional wisdom said, “Give her Benadryl and start driving to the hospital,” where they’d inject epinephrine and observe her for a few hours. Back then, too many children and adults didn’t make it to the hospital alive.
With the advent of auto-injectable epinephrine, rules changed: Inject first, then go to the hospital for supportive treatment and observation. Even so, people are hesitant to give up the Benadryl habit. “It worked, and I’d rather not have to go to the hospital” is the common cry. In truth, getting by with that treatment means you were lucky; the body supplied enough of its own epinephrine to get through the crisis, this time. What about next time?
In the vast majority of fatal anaphylaxis cases, epinephrine was not given or not given soon enough to save a life. It’s like standing on a sinking ship waiting to see if it’s really going to go down, then realizing too late that there are no life jackets. Epinephrine auto-injectors save lives — but only if they’re available and used in time of need.
A Healthy Balance
The question is how to strike a balance between avoiding known food allergens and coexisting with them. Knowing what to do and how to do it is the best antidote to fear of the unknown.
Kristin Lerner, mother of an 8-year-old milk-allergic daughter, knows this. Her motto: “Teaching kids about food allergies starts the day of diagnosis — there is no formula for success other than modeling the behavior you want your child to repeat when you’re not there.”
Kristin’s daughter eats at the same cafeteria table as classmates. “She was highly allergic to milk when she was younger, so we still don’t take chances. She knows to clean her place at the table before she sits down; she uses a placemat and sits at an end spot to minimize exposure. If someone accidentally spills milk on her skin, she immediately goes to the nurse’s office. She and the school nurse know exactly what to do.”
In dealing with food allergies, there’s no “one size fits all” approach, points out allergist Dana Wallace, MD, president of the American College of Allergy, Asthma & Immunology. “A diagnosis of food allergies does not mean the child will have a fatal or life-threatening anaphylactic reaction,” she says. “Our job is to make sure you know what symptoms to watch for and you’re ready to treat them, should they occur.”
It is not possible, no matter how hard anyone tries, to create a peanut-free or allergen-free world. When it all boils down, there are very few rules and many opportunities.
Here’s our list:
- Consult a board-certified allergist to confirm the diagnosis, receive training and instruction, and get a written Anaphylaxis Action Plan.
- Avoid or eliminate food allergens as much as possible; cook fresh rather than processed foods whenever you can. Read and re-read food labels.
- Always carry two epinephrine auto-injectors and know how and when to use them — an anaphylactic reaction can happen at any time.
- Contact AANMA for practical, medically accurate, realistic help. Start at www.aanma.org or give us a call at 800.878.4403.