How Real Families Deal with Food Allergies
Nut-free zones and EpiPens on hand have become the new normal in schools. Two out of every 25 kids have a food allergy, and more than a third of them have suffered severe reactions. That means a staggering number of parents must worry every single day about how to protect their child from threats that aren’t always as obvious as a PB&J. These firsthand accounts give you a window into the emotional challenges of having a highly allergic child—just like the ones who may be coming over to your house for a playdate.
“I was in denial.”
—Allison Villafane-Kaplan, of Rocky Point, New York
A tiny bite of chicken nearly cost my oldest daughter her life. We were visiting relatives over the holidays in 2013 and I gave Virginia, who was then 4, permission to taste what my aunt was cooking. It hadn’t crossed my mind that the chicken might be dipped in eggs, which Virginia is allergic to. She is also severely allergic to peanuts, tree nuts, shrimp, soy, and sesame. Almost immediately, she started having trouble breathing, broke out in hives, and kept saying, “Mommy, I think I need to go to the hospital.” I gave her children’s Benadryl and she inhaled her nebulizer treatment to keep her airways open. “We can handle this without using her EpiPen,” I thought. Looking back, I was in denial about the severity of her allergic reaction.
Virginia vomited on the drive home, but then she felt better. I figured the episode was over—until she woke me in the middle of the night and said, in a raspy voice, “Mommy, I can’t breathe.” I dialed 911. The ambulance rushed us to the hospital, where she was treated for hours before being released. Because I hadn’t given Virginia an EpiPen injection right away, the reaction had become more severe. She wound up with pneumonia, which required IV antibiotics. I was heartbroken to see her looking so weak and pale, and it was a major wake-up call for me.
Although Virginia’s pediatrician had diagnosed her food allergies at 9 months, I’d never truly understood the danger of anaphylaxis before that day. After that, we hung a “Don’t Forget the Epi” reminder on the inside of our front door and a “Nut-Free House” sign on the outside (since nuts are particularly likely to cause a severe allergic reaction and, unlike eggs, can contaminate a surrounding environment). I banned all products containing nuts or sesame from our house. I now won’t trust a packaged food until I call the manufacturer to confirm that it’s produced in a nut-free facility. My sister (who is also our sitter), father, and mother-in-law live nearby and also maintain “safe houses.” They’re trained in identifying anaphylaxis and using an EpiPen, which makes us feel supported.
However, I can’t say the same for the outside world, where hazards lurk everywhere. Our doctor has stressed the importance of cleaning Virginia’s hands regularly when she is out in public. I’m the crazy mom at parks and indoor play areas, scrubbing equipment with baby wipes and cleaning my daughter’s hands a million times. If we see kids eating nuts, we leave. Even going to the movies is work. I arrive super-early so Virginia gets an aisle seat, and I put a disposable cover over her chair.
Thankfully, food allergies can qualify as a disability under federal law, so Virginia is eligible for special assistance at her public school under what’s called a Section 504 Plan. An aide shadows her, wiping down surfaces and carrying her medicine just in case. Virginia’s classroom and lunch table are nut-free, and so are the school’s hot lunches. I’m nervous that kids can pack nuts from home, but it would devastate Virginia to have to eat somewhere else.
Letting Virginia live a full life means assuming some risk, but I try to minimize it. We bought a piano so she could take lessons at home rather than on a shared keyboard. Playdates are always at our house. It helps that her sisters—Emma, 6, and Abby, 4—are her closest friends. The summer after she had her first anaphylactic reaction, Virginia had two more—after eating a cookie and an ice-cream sandwich we thought were safe. Virginia asked Emma to hold her hand during the injections. She writes stories and makes up songs portraying Emma as the hero, saving her from a food-allergy monster. Still, she feels left out when she sees kids at a birthday party eating ice-cream cake. Bringing a cupcake from home isn’t the same.
I feel a ton of guilt whenever she has a reaction—and when she says, “Mommy, I’m afraid I’m going to die young.” Being a strong advocate for her has helped me cope. Sadly, my efforts sometimes fall on deaf ears. “You should homeschool,” some callous moms have told me. But ensuring that she gets proper care has been empowering. So has creating a food-allergy-awareness program at school. Sometimes this project requires me to attend evening meetings. When I tell the girls where I’ve been, Virginia always smiles. It makes her feel secure to know that her mother is doing everything that she can to protect her.
“You can never let your guard down.”
—Malia Heimbach, of Lexington, South Carolina
I remember calling a friend when my oldest son, Parker, was 10 months old and saying, “Guess what? He’s that kid—the one who’s allergic to peanuts.” Parker had developed eczema that we thought was a reaction to milk and eggs, and testing showed that he was also allergic to peanuts and tree nuts. The doctor prescribed an EpiPen, but I never thought I’d need to use it. So he won’t eat peanuts, I figured. Problem solved. Parker had his first anaphylactic reaction when he was 2. We were at the playground with some of my friends and a little girl gave him a peanut-butter-filled pretzel. I didn’t realize it until he showed me the piece with the peanut-butter part missing. Casually, I searched “When to give an EpiPen” on my phone, but I rationalized to my friends, “I’m not positive he ate it, and I don’t want to give him the shot if it’s not necessary.”
Within minutes, my active son became lethargic and lay down on a play structure. I called our pediatrician and the nurse recommended that I give him children’s Benadryl. By the time we got home, Parker was wheezing and had developed a rash on his neck and chest. I tried to give him the medicine but he threw it up. We hurried to the doctor’s office, and he gave Parker a steroid injection (which can be used to treat inflammation caused by an allergic reaction). Gradually his symptoms went away. Afterward, I made an appointment with an allergist. She scolded me, saying, “You should have used his EpiPen.”
Two years passed without another episode. By then, I had become lax about carrying Parker’s emergency medicine. Then I learned a hard lesson: You can never let your guard down, because food allergies are unpredictable. At a touch-football game, one of his teammates was eating trail mix. He and Parker ran onto the field holding hands. It’s fine, I thought. Parker had never had a reaction from someone else eating nuts. As we drove home, he said, “Mommy, my eye itches.” Then he started screaming. I turned around. His eyelid had blown up, and the white of his eyeball had ballooned over the iris. Hives were developing on his neck. I jumped on the freeway and headed toward our pharmacy to get a new EpiPen, but I got caught in traffic. So I called 911 and shouted, “I need your help—my child could die, and I’m stuck on the highway.”
- RELATED: How to Give an Epinephrine Injection
The ambulance met us at the next exit. Medics administered epinephrine (the same medicine in an EpiPen) and oxygen. Parker’s swelling slowly subsided at the hospital. I kept hugging him and crying. The most frightening part about anaphylaxis is not knowing how far it might progress. I kept picturing him going into cardiac arrest. It wasn’t until Parker asked, “Mommy, am I going to die?” that I thought, “I need to calm down.”
That afternoon, I ordered his medical-alert bracelet and vowed that he’d always have an EpiPen two-pack with him, in case one malfunctioned or he needed a second dose. I now carry one everywhere. Parker takes another to his activities. A third stays at home and a fourth sits in the school nurse’s office. After his trail-mix reaction, I researched anaphylaxis and started following food-allergy blogs and groups. But reading about tragic deaths and the possibility of cross-contamination made me too anxious, so I stopped.
Two years ago our family moved from Hawaii to South Carolina. Peanuts are a big part of the culture here. The complex where Parker plays his baseball games serves them, and there are shells all over the ballpark. My husband, Christian, was an assistant coach last year and made sure Parker stayed safe. However, he couldn’t keep coaching because of his work schedule. I’m tempted to push for a nut-free policy, but I don’t want people to dislike me or, worse, my kid because I’m a complainer.
Sometimes I can’t control my mama-bear instincts. To ensure that Parker’s school understood the severity of his allergies, I showed teachers pictures I took during our ambulance ride and explained, “This is what happens to my son from being exposed to nuts—not even eating them.” Parker sits at the nut-free lunch table, and it touches me that some classmates have told their parents not to pack peanut butter so they can sit with him. I focus on keeping him safe day-to-day and often have to make tough decisions. It must have seemed rude when we suddenly left a party when they started handing out peanut-butter cups, but to me it was a necessity that any food allergy mom would understand.
My daughter is also severely allergic to peanuts and had her first anaphylactic reaction at age 3. She had hives all over her body and her throats was swelling shut. Luckily we were at th hospital and they administered epi. She is now 10 and her IgE is greater than 100. We had heard of a program called Oral Immunotherapy or OIT where they slowly give your child extremely minute doses of peanut flour in kook-aid and titrate the dose up as your child tolerates. She started in May and is doing great. In about 22 weeks she won't have to worry about this allergy anymore. They can do the same for tree nuts and other food allergies too. We wanted to do it instead of being scared for her life every time we went to a restaurant or ballgame, church dinner or movie. This is under medical care with an allergist and very controlled. We are very happy we are doing it. Something to think about. They are doing it all over the country now.Read More
It is important to clarify that it isn't just nuts that contaminate environments. My son has multiple food allergies and they are all equally dangerous for him. Cleaning up and washing hands after eating all foods, keeps those with all allergies safe.Read More
Thank you both for sharing. All I can say is be the advocate for your child no matter what anyone thinks or says. Your child will then hopefully follow your actions and develop the ability to advocate for him/herself when older. It is life and death there is no choice their lives depend on their parents teaching them how and when to react to an emergency and not be afraid what anyone says. Do whatever it takes to make people aware it just may save a life. I urge you to go to www.RedSneaker.org to see what Oakley's parents are doing to honor there son who died from an allergy to nuts.Read More