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10 Things Families with Food Allergies Want You to Know

This NJ mom shares what she's learned.


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Photo courtesy of Allison Inserro
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Maybe it was a spooky premonition, but I clearly remember looking at my son sleeping near me in the hospital room the day of his birth and wondering, “How do I feed him? What if I can’t feed him?” Sure enough, within two weeks he was screaming from my breast milk and 10 months after that, we were the owners of epinephrine autoinjectors and an unbelievably long list of foods he was allergic to. Fourteen years later, my son will soon take his food allergies to high school, along with his love of social studies, language arts and computers. And in four more years, he’ll be off to college.

Since your child is likely friends with someone like my son, here’s a list of 10 things families with food allergies want you to know:

Learn how to use life-saving epinephrine.

Let your kids learn, too. Someday they’ll be teens, walking through town or going to the movies, enjoying their freedom. Knowing how to save a life is easier than you think. Epinephrine, or epi-pen, is the only way to slow anaphylaxis, a severe life-threatening allergic reaction. It allows enough time to get to the emergency room for additional treatment.

Food allergy bullying is real.

While my son has largely been spared this horror, other kids I know haven’t been as lucky. About 1/3 of kids with food allergies report that they’ve been bullied because of those allergies, according to Food Allergy Research and Education (FARE). Food allergies can also lead to kids feeling ostracized at the food allergy table at lunch. Please, teach your child empathy.

The “what if” monster that can make us crazy at times, even when we don’t mean to be.

“What ifs” make all parents worry, but we get an extra dose. What if his preschool hands out the wrong snack? What if my teen forgets to take his epi-pen to dinner and the cook makes a mistake? Colin used to exclaim, “Uh-oh, someone ate a peanut!” whenever he saw an ambulance as a young child, because in his mind, that was the only possible use for them. We read food labels multiple times and sometimes call food companies just to make sure, but mistakes still happen. Like the unlabeled rice cracker that led to one of our earliest ambulance trips, or the cross-contamination on a usually-safe frozen dessert that led to leaving the zoo in a blaze of lights and sirens.

Not every aspect of having a food allergy is terrible.

My son has learned to advocate for himself, whether it’s by talking to a teacher about his food allergies or learning to order for himself in a restaurant. Because he’s allergic to multiple foods (now down to dairy, eggs, peanuts, tree nuts and sesame), he grew up, for the most part, eating food cooked from scratch and now has the palate of a sophisticated adult.

Food allergies are expensive, especially if you’re allergic to multiple foods.

It’s not just the cost of epinephrine (especially since they’ll need multiple pens for school, home and sports) that’s high. You’ll also have to spend on allergy-friendly brands and eat at restaurants known for great service and attention to detail. Also, because your kid likes nice restaurants, chances are he’s all about fresh fish and juicy steak.

Kids with chronic health issue are more than the sum of their condition, and that goes for kids with food allergies, too.

Please don’t refer to the girl on your daughter’s softball team as “the peanut-allergic kid.” They’re athletes, artists, musicians, avid readers and science lovers, just like yours. And sometimes just a pain in the keister, again, just like any other kid.

Yes, we’ve all read about that latest food allergy study you heard about on the news.

Yes, we’ve asked our allergist about it. No, it’s not going to work for our child. And please don’t get me started on homeopathic oils for allergies. We really do appreciate your concern, but please understand that we know these things, too.

Speaking of concern...

there’s a line between pity (not good!) and appropriate concern (good!) Saying, “Poor kid, what does he eat?” while he’s in earshot is never a good idea. Offering to keep safe cookies in your house for when he comes to visit is great.

We can’t be as spontaneous as we’d like.

It’s not uncommon for families with multiple food allergies planning a road trip or vacation to strategize for a few hours (or a day) figuring out what to pack, where to stay, what and where to cook...add in a different allergy set for each kid, and we’re pretty much wiped by the time we start the car. We do it anyway, of course, to see the joy on our kids’ faces when we get to our final destination. (And after a trip like the one described above, many moms resort to shipping boxes of allergy-friendly snacks ahead of time to destinations ending in -World or -Land in Florida or California.)

We still have hope that our children will outgrow their food allergies over time.

We stay optimistic that more products and services will come on the market for our kids, and that the many studies underway will help with treatment or cure. Most of all, we want our kids to be healthy and happy, just like yours.

What to Do If Your Child Has an Allergic Reaction

One in 13 children has a food allergy, according to Kids With Food Allergies, a division of the Asthma and Allergy Foundation of America (AAFA). If a child with food allergies shows symptoms, use epinephrine and call 911 immediately. If you don’t have epinephrine, tell the dispatcher that you need it.

At the hospital, your child may receive additional epinephrine and other meds. The hospital should observe your child for at least four hours to make sure a second reaction (called a biphasic reaction) doesn’t occur. Don’t let the emergency department send you home too soon.

Signs of a severe allergic reaction or anaphylaxis include:

BREATHING: wheezing, shortness of breath, throat tightness, cough, hoarse voice, chest pain/tightness, trouble swallowing, itchy mouth/ throat, nasal stuffiness/congestion

CIRCULATION: pale/blue color, low pulse, dizziness, lightheadedness/ passing out, low blood pressure, shock, loss of consciousness

SKIN: hives, swelling, itch, warmth, redness, rash

STOMACH: nausea, pain/cramps, vomiting, diarrhea

OTHER: anxiety, feeling of impending doom, itchy/red/watery eyes, headache, cramping of the uterus.

The most dangerous symptoms are low blood pressure, breathing difficulty and loss of consciousness. Visit kidswithfoodallergies.org for more information.

Allison Inserro lives in Metuchen with her teen Colin, who started accompanying her on trips to Trenton as a toddler to advocate for stronger legislation for children with food allergies.

 

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