What it's like to raise a child with food allergies: 'Some nights, I can't sleep thinking about the close calls'

Mom Lisa Lombardi with her son Gus, who has a food allergy. (Photo courtesy of Lisa Lombardi)
Mom Lisa Lombardi with her son Gus, who has a food allergy. (Photo courtesy of Lisa Lombardi)

If you hand my son an orange, he’ll ask, “Does it have nuts in it?”

You might think, “What’s wrong with that kid? Of course not!” But I think, “Smart boy.”

You see, my son Gus has food allergies to peanuts and tree nuts, and even the smallest amount of accidental ingestion can trigger anaphylaxis — a severe immune response that affects multiple systems and can throw the body into shock. It can even be fatal, so any bit of accidental ingestion means we have to use an epinephrine device (like EpiPen or Auvi-Q) and go straight to the ER.

The hardest thing about raising a child with food allergies is that you have to be perfect. You always have to ask that question about nuts. You need to read labels every time, even for foods you’ve bought a zillion times before (ingredients change). And to be honest, that makes me anxious a lot of the time.

Just a few weeks ago, there was a tragic story in the news of Alexi Ryann Stafford, a 15-year-old girl from Florida who died from eating a Chips Ahoy Chewy cookie that she didn’t realize contained peanut butter. The top of the package with the label was peeled back, so when she went to grab one at her friend’s house she couldn’t tell it was a variety made with Reese’s Peanut Butter Cups, not the Chips Ahoy cookies in similar red packaging that she knew to be safe. Despite treatment with two epinephrine devices, she went into anaphylactic shock and died.

Video: Teen Dies From Peanut Allergy After Eating Chips Ahoy Cookie

Stories like this one are terrifying, because they underscore that all it takes is a single moment to have a fatal turn of events, even if you are careful every day. Alexi’s family deserves so much credit for sharing the story to make sure that no other family makes the same mistake.

Because mistakes happen to all of us, no matter how vigilant we are. Once, my husband picked up cookies on a whim. He read the label — or so he thought. While I was at work the next week, our babysitter called to say, “Gus ate a bite of that cookie and his mouth feels itchy.” It turned out the cookies had pecans, a fact that was buried in a long list of ingredients, so my husband didn’t notice. (The reaction was mild, thankfully.)

Another time, I brought home an Italian combo sandwich for my son without asking about nuts. After a single bite, my son said, “My tongue feels funny.”

Oh nooo. Those are words you never want to hear if your child has food allergies. I pulled apart his sandwich and found pistachio slivers: The sandwich had mortadella, an Italian bologna that comes studded with pistachios, one of the nuts he is most allergic to. What had I done? We immediately injected the contents of an EpiPen into his outer thigh and raced to the ER.

And sometimes, near misses happen when you’re out and not able to control the circumstances.

On a recent Friday night, we took our sons to Yankee Stadium to see the Yanks play the Mets, their favorite team. An inning in, Gus whispered that the guy behind him was eating peanuts. Sure enough, he was snapping open peanuts and tossing the shells as he went. Not a big deal to the guy — he was just enjoying a baseball game on a glorious summer night. But it was a big deal to Gus. There was a mound of shells under the man’s seat, spilling underneath Gus’s seat, too. If one of those fragments ended up in my son’s nachos, we might have a life-or-death emergency on our hands.

While Gus and his brother switched seats, my husband threw out the nachos and replaced his drink. I wondered whether I should ask the usher to move us, but where would we go? It was a sellout crowd.

This is pretty much a normal night when navigating food allergies. We want our son to grow up like other children, open to all the amazing adventures life holds. Baseball games, parties, travel — we do it all. But dealing with food allergies means you live in emergency-preparedness mode. I even think about that when weighing whether to have a second glass of wine: Could I drive to the emergency room?

My son’s first serious reaction happened when he was 3 years old, on a vacation to Puerto Rico. I still thank God he was OK, because that day could have turned out differently if we were deep in the rainforest instead of right in a chain hotel in San Juan. His face swelled up after eating trail mix with nuts, and he had difficulty breathing. It was truly terrifying.

He has had reactions after a family party, after a McDonald’s drink that must have been cross-contaminated, and after a peanut challenge at the allergist’s office.

Some nights, I can’t sleep thinking about the close calls.

The one thing that calms me, to be honest, is Gus. Kids with food allergies have a superpower: They are mature way beyond their years.

Gus is 11 now and is able to speak up for himself. When he orders his meal, whether it’s at a sit-down restaurant or a fast food counter, he says, “I am allergic to all nuts. Can you make sure there are no nuts in anything we order? Thanks.”

He’s clear. He’s confident.

He’s got this.

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