| Family First Feature |

On High Alert

By Lori Holzman Schwartz | January 28, 2025

For kids with severe food allergies, it’s a matter of life and death

As Told To Lori Holzman Schwartz

One little spill, one moment of panic, and my worst fear became reality: my son went into anaphylactic shock. Because for kids with severe food allergies, it’s not just a matter of restricting their diets — it’s a matter of life and death.

Chaim was born perfect — clear skin, blue eyes, an Apgar score of nine — but something changed after the very first time he nursed while we were still in the hospital. His clear skin turned flaky and red. He looked like a sunburned tomato. He cried the whole time we were at the hospital and didn’t sleep at all. Chaim was my second baby, and my maternal intuition told me that something was wrong. I kept asking the nurses to take a look at him, but they dismissed my concerns. “It’s totally normal,” they told me. “He’s a newborn. He’s still adjusting to the world.”

When we took him home, things went from bad to worse. His skin was chronically red and peeling, and he threw up around 50 times a day. He wouldn’t sleep more than half an hour at a time, and only if I stood up, holding him upright. I would put my older daughter to sleep, and my husband would hold him for two or three hours so that I could take a nap before I stayed up with him for the rest of the night.

I took Chaim to dozens of doctors — pediatricians, dermatologists, gastroenterologists. The first few months, the pediatrician wasn’t concerned. “It’s just colic,” he said. “He’ll grow out of it. Babies are often fussy.” But my sister Ava, a nurse and mother of four, told me that babies didn’t cry like that unless something was wrong. As a mother, I could tell that my child was in pain. It hurt me to see him suffer. I took him to four different dermatologists. They gave us creams and steroids, which helped his skin for as long as we used them. But the second we stopped, his skin would turn red and peel again.

It was only after Chaim stopped gaining weight that the pediatrician began to take us seriously. Finally, he sent us to a pediatric gastroenterologist. The doctor knew right away that something was wrong. Normally, she would figure it out with an endoscopy, which would allow her to see Chaim’s digestive tract with a camera. But she didn’t want to put a baby that young under anesthesia to do the endoscopy. Without it, she could only take a stab in the dark at what was wrong with him. She put him on medication for severe acid reflux, but it didn’t help. Chaim threw up as much as ever.

Ava thought it might be allergies — she had a child with allergies, so there was a family history. We went to the allergist, but Chaim’s results came back negative! I only learned later that it’s very common for allergy testing to get a false negative before the child has been exposed to the food. It’s only once the child starts eating solids and actually ingests the allergen that the allergy will show up in a blood test.

At 11 months, the allergist finally gave Chaim his diagnosis: He was allergic to fish, dairy, eggs, peanuts, sesame, soy, mustard, tree nuts, and wheat. At 12 months, the gastroenterologist finally gave Chaim an endoscopy. She diagnosed him with EOE, or eosinophilic esophagitis, an immune system disease that occurs when the body has an allergic reaction to certain food or environmental allergies. Even if a food doesn’t set off an anaphylactic reaction, it could still inflame his digestive tract and make him sick. To test which foods triggered it, the doctor had to put him to sleep and take a biopsy of his throat and stomach. Chaim had to go through that six times!

World of Fear

When people hear my child has food allergies, they think the solution is simple — just don’t let him eat the food he’s allergic to. They don’t realize that this diagnosis changed our whole world. For my son, just coming into contact with one of his food allergens is enough to trigger a full-blown anaphylactic reaction.

When my son was a year old, he was sitting under the table while I made his older sister some chocolate milk. The cup spilled on him, so I put him into a bath to wash off the milk. In the bathtub, right before my eyes, he started swelling up, his eyes and nose started running, he broke out into hives, and then he started gasping for breath.

I should have administered the EpiPen right away, but at the time, I didn’t know what to do. I had no idea that just touching an allergen could cause anaphylaxis. I thought you had to ingest the food, and I knew he hadn’t done that. I was scared and confused.

I FaceTimed Ava, but while we were on the call, Chaim stopped breathing and turned purple. “Give him the EpiPen right now!” my sister shouted. Shaking, I administered the shot and called an ambulance. Chaim was rushed to the hospital, where they gave him steroids and hooked him up to an IV. Seeing him lying on the hospital bed, realizing I almost lost him, was the scariest moment of my life.

Family members say, “Let’s all go out to a restaurant.”

Friends invite us over for Shabbos meals.

But we turn down every invitation. Sure, we would love to spend time with our friends and family, but nothing is worth seeing my son go through an anaphylactic reaction.

Many people have a hard time understanding what living with food allergies really entails. My husband is part of a close-knit chaburah of baalei teshuvah who spend shabbatons together, and until Chaim got his diagnosis, we would always join them for an uplifting Shabbos. When the next shabbaton came up, my husband’s friends urged us to come. “You’ll bring Chaim snacks. It’ll be fine,” they coaxed.

They didn’t understand that Chaim, who was almost two at the time, could grab a fallen cupcake on the floor and have an anaphylactic reaction just from touching it. “It’s not a big deal,” they said. And I would have to bring enough food for him for the whole Shabbos. “Don’t worry about it,” they said. “We’ll have fruit.” We regretfully passed on the Shabbos. Although everyone was nice about it, we could tell that they didn’t quite get it.

Keep Him Safe

When Chaim has a playdate, one of us stays at the other child’s house. What if he’s exposed to something and the parents don’t know how to administer the EpiPen? Sometimes, when we would invite friends over to our house, they would let their kids run around, eating food that contained Chaim’s allergens. I was in a panic to make sure they didn’t touch Chaim’s toys with allergen-covered hands. I was terrified they would drop a crumb somewhere and Chaim would eat it. Friends don’t really understand, and I get it. It’s a hard thing to fully grasp when you aren’t in this boat.

Strangers will assume that it’s my responsibility to keep my child safe, and I do agree with that, but they have a part to play in this, too. It’s so much more difficult when we go to the park or the doctor’s office and find kids eating Bamba or cheese snacks. I wish that they’d be mindful in public places, clean their children’s hands, and try not to leave food wrappers lying around.

When I was in the last trimester with my third child, Naftali, I spent a ton of time cooking and stocking the freezer with ready-to-eat meals. I always made sure Chaim had three meals a day, and I knew I wouldn’t be in any shape to cook when I got home from the hospital. When your child has so many life-threatening allergies, there’s no taking a day off from cooking. We can’t order out from restaurants, and I had to turn down the meal train our shul offered. When I went into labor with Naftali, I turned to my husband and said, “I think there’s still time — I’m going to cook for Shabbos.” Somehow, I managed to cook an entire Shabbos meal in the early stages of labor!

Naftali was also a fussy, spit-up prone baby with red, peeling skin. He wasn’t nearly as difficult as Chaim, but I suspected he had an allergy as well. I went on an elimination diet, and I realized that Naftali’s skin cleared up when I stopped eating eggs. Sure enough, at 12 months, the allergist diagnosed him with an egg allergy.

Fine-Print Food

Shopping with kids with multiple allergies is a huge struggle. I always read the fine print on labels at the grocery store. Federal law requires companies to clearly identify if their food contains one of the major nine allergens (milk, eggs, fish, shellfish, tree nuts, peanuts, wheat, soybeans, and sesame), but they are not legally required to let consumers know if there’s a risk of cross-contamination — many do have this information to avoid lawsuits, but not all.

I routinely call food companies to learn more about what’s printed on the ingredient labels. Often, the label says, “spices,” or “natural flavoring,” and those hidden ingredients could contain one of Chaim’s allergens.

The truth is, my husband and I don’t always see eye to eye on this. I’m more neurotic about it, and he’s willing to go with the flow. If a food product doesn’t list one of my son’s allergens, then he says, “Let’s just try it and monitor him closely.”

“You weren’t there the time he had an anaphylactic reaction,” I argue. “If you had been, you wouldn’t say that.”

Whenever Chaim tries a new food from the grocery store, even if it’s one that claims to be free of his allergens, we give him a small amount of it, then wait 15 to 20 minutes to see if he’s okay. Even when he’s trying a brand of chips he hasn’t had before, we’ll give him one chip, check his reaction, then give him the rest of the bag.

Keeping my son healthy and nourished on his limited diet is a huge challenge. He lives on fruit, meat, vegetables, beans, and rice. He also drinks a special formula twice a day that’s loaded with nutrients.

Eating Independently

Chaim didn’t start school until he turned five. The allergist told us not to send him to school until he was old enough to be aware of his allergies and know what he can’t eat. He’s in first grade now, and he knows how to keep himself safe. The other day, his teacher offered him a lollipop, and he said, “You have to call my mom and ask if I can have that.” I was so proud!

I’m very grateful to Hashem that Chaim’s such a positive, happy kid and he’s never angry or resentful. With his big smile, he says, “Hashem gave me a special nisayon because he knows I’m strong.” I hope that never changes.

There are times when the other children make him feel bad if he can’t eat the same things as them. One day, another boy looked over at his lunch and said, “Eww, why do you eat that?” It breaks my heart when he’s made fun of for his allergies.

When Chaim first got his diagnosis, I didn’t know how I was ever going to feed him or let him become independent. But I gradually discovered that parents of children with severe allergies can find ways to keep their children safe and included. I work hard to make Chaim lunches that look like the other children’s. If they’re all having pizza for lunch, I’ll make him a cauliflower-crust pizza dough with vegan cheese.

Hope Mixed with Fear

We do have hope: There are advances being made in allergy treatment and management that will improve things for families dealing with food allergies. Scientists are testing the last stages of a nasal spray for epinephrine instead of the EpiPen shot. Sometimes, parents hesitate to give the shot, like I did the first time milk spilled on Chaim. A spray might ease some of the fear around administering it. Scientists also think Xolair, a drug that’s been around for decades to treat asthma, might prevent people with severe allergies from going into anaphylactic shock if they accidentally consume small amounts of their food allergen.

But still, my anxiety for my son’s future feels overwhelming at times. A few years ago, there was a story in the news about a young woman in Israel with a dairy allergy who ate what she thought was pareve ice cream at a fleishig restaurant. She thought she’d be safe in a fleishig restaurant. What she didn’t know was that the chef had run out of whipped cream, so a waiter had run out to a grocery store and mistakenly bought a dairy one. She didn’t have her EpiPen on her, and sadly, she passed away. These stories keep me up at night.

Recently, the allergist cleared Chaim to eat small amounts of wheat. The allergist gave us a recipe with an exact amount of wheat to bring to our appointment. In the doctor’s office, Chaim ate a small amount — the first time, it was an eighth of a piece of bread. Then we waited 15 minutes, and the allergist checked Chaim’s vitals. When they were good, he had another eighth. This went on for two hours until he finished the whole slice.

Even though the allergist cleared Chaim to eat wheat, it still triggers his EOE. If he eats too much, he’ll feel sick, though he won’t get an anaphylactic reaction. Through this same process, he’s also been cleared to eat small amounts of soy, and next month, we have an appointment at the allergist for a fish challenge.

But after the appointment, for the first time, at six years old, Chaim was allowed to have his first bite of challah at our Shabbos meal. I say hamotzi every day, often without thinking, but on that Shabbos, my son stopped, focused, then slowly said the words, “hamotzi lechem min ha’aretz,” as we all listened with great emotion. What beautiful words.

Food Shopping Made Easy

Shopping with allergies can be a challenge. Here are some helpful tips from moms of kids with severe food allergies.

There’s a helpful app called Fig that shows you everything you can eat. You select your allergies and then type in the food item you’re looking for. The app will show you all the brands that are gluten free and stores where you can find them. You can also use the app to scan barcodes while you shop, and it will tell you if the food contains the allergen. However, it doesn’t always have the more obscure Jewish brands, and it’s always important to do your own research — call the company and check the website before trusting the app — but it’s a great place to start.
When you find a product you like, buy in bulk. Whenever I see a jar of WOWBUTTER, I always stock up on it because I don’t know when I’ll see it again. WOWBUTTER looks and tastes like real peanut butter, and it even comes with stickers to put on your child’s lunch bag so teachers know that it’s safe for nut-free and seed-free schools.
The Whole Foods grocery store has many allergy-friendly options. Amazon is good for ordering allergy-free dry goods.
These are recommended brands that make products without certain common allergens (check the label to be sure that it’s free of your child’s specific allergy, and the hechsher to make sure it’s one you eat):

Made Good — granola bars and snacks

Home Free — cookies and snacks

Enjoy Life — cookies and snacks

No Whey — chocolates and desserts

Daiya — dairy-free cheeses

Dandies — marshmallows

(Originally featured in Family First, Issue 929)

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