The Mom Racing to Diagnose Her Child’s Life-Threatening Food Allergies (2024)

how i got this baby Apr. 18, 2024

As told to Kristen Mascia, freelance writer and editor who covers health and parenting

The Mom Racing to Diagnose Her Child’s Life-Threatening Food Allergies (1)

Illustration: Palesa Monareng

Because no two paths to parenthood look the same, “How I Got This Baby” is a series that invites parents to share their stories.

Melissa and her husband Mehmet were both thrilled when they learned Melissa was expecting a baby.In 2022, she gave birth to a son, Mete, following a healthy and fairly uneventful pregnancy. Though Mete spent his first night in the NICU, both mother and son were discharged two days later with a clean bill of health. The family of three headed home, ready to settle into a new life together.

But the first week of parenthood was more challenging than Melissa and Mehmet anticipated it would be. Mete kept falling asleep while Melissa breastfed him. “We thought that maybe it was normal, because he was a little bit early. But after a few days, he wasn’t really perking up,” recalls Melissa. The baby didn’t even rouse when they rubbed an ice cube against his foot. At Mete’s first checkup, the couple learned that he had jaundice, which happens when the liver hasn’t developed enough to filter bilirubin from the blood. The condition can contribute to sleepiness in a newborn; Mete was readmitted to the hospital to receive light therapy to correct it.

Mete grew more alert in the weeks following his treatment, but he didn’t gain weight. So, following the advice of her lactation consultant, Melissa started topping his feeds with a bottle of high-calorie formula, and after a few weeks, his growth improved. Then, when Mete was around five months old, the couple continued following the traditional feeding playbook: They introduced solid foods, beginning with infant oatmeal. Mete didn’t seem interested in it, which didn’t worry Melissa.But she did stress over another new development: Mete was pooping a lot — more than seemed healthy.

“He really started blowing out. It would go all the way through his clothes, his diaper and whatever he had on,” Melissa says. “Even my friends thought it was weird. I remember them saying, ‘Our babies didn’t do that. Is that normal?’”

Soon after, violent vomiting episodes began. “I picked him up after a nap and he vomited everywhere. I was covered, he was covered, the floor was covered. Thirty minutes later, he did it again,” Melissa recalls. When Melissa called Mete’s pediatrician, she dismissed the couple’s concerns, says Melissa. “She said it was cold and flu season and he had probably caught a bug somewhere.” Melissa wasn’t convinced. She and Mehmet were cautious new parents who rarely went out with the baby and seldom had people over.

Melissa had an inkling that solid food might be causing Mete’s digestive troubles, but she pressed on with serving him new foods — including high-risk allergens like peanuts — at each meal. “Our pediatrician told us that giving him those foods earlier could have a protective effect against allergies, so we shouldn’t wait,” Melissa says.

On the first signs that Mete had an allergy

About a month after we began solids, Mehmet went to see his family in Turkey and I went to Maryland, where I grew up, to stay with my parents and get their help with the baby while I worked remotely. Over the course of that month, Mete had had a couple of vomiting episodes, but they weren’t as severe as his first. They also happened hours after he’d eaten, so we didn’t connect them to food. We assumed that whatever virus he had was lingering.

But I couldn’t shake the feeling that Mete was off. He was still pooping a lot. I was constantly having to take work breaks to help my dad mop up. I’d even bought waterproof sheets for his crib.

One day, on a Monday while Mehmet was still in Turkey, I took a break from work to feed him. I gave him some kind of puree and added the allergen powder. He only ate a few bites and was done. Then he nursed.

But as soon as I sat him up, he vomited everywhere — like projectile, fire-hose vomiting. The kitchen was covered. And he kept throwing up like that, five or six times, over the course of a half-hour. Then he started dry heaving. My parents and I were freaking out. We couldn’t get him to stop.

Then, all of a sudden, Mete went limp in my arms. I don’t know how to describe it; he just wasn’t responding to me anymore. I held him up to my dad and screamed, “What’s wrong with him?”

“Should I call 911?” he asked. “Yes,” I answered, “I guess so. I think he’s breathing, but it’s hard to tell.” I was crying on the phone with the dispatcher, who was asking me to count Mete’s breaths. I put my face down to his face and could barely feel them.

The paramedics got here quickly and rubbed his sternum, and that woke him up. He was responsive again, and his vitals were okay. “Look, we can take you guys to the hospital right now, but he won’t be seen right away,” one told me.“It’s wintertime. The emergency department is going to be full of sick people. Do you want to wait, and call us back if it happens again?”

I didn’t know what to do. I’d called Mehmet when the baby had started vomiting and woke him up in Turkey. I was panicking, thinking to myself, Is my next call to Mehmet going to be me telling him our baby died?

I was looking at these paramedics, like, Sure, my baby was just limp in my arms, but okay, leave us here? I was beside myself.

We decided to let the paramedics go, but we were all a wreck after that. Mete was pretty unhappy and hard to settle. He finally got to sleep sometime in the middle of the night. I fell asleep on the floor, next to his crib. I didn’t want to leave him alone.

On figuring out what was wrong

We called our pediatrician as soon as her office opened the next morning. I was scared and angry, because I knew I had been right — something about the food was making Mete sick. I told the doctor what he had eaten before the incident, and she said, “Okay, don’t feed him that again.” Then she referred us to a pediatric allergist. We got an appointment a few weeks later.

While we waited for the appointment, I was on high alert. The allergen mix-in we’d been using had a bunch of ingredients in it, so it was impossible to isolate what was making him sick. I also worried he was reacting to something in my breast milk, so I preemptively cut high-risk allergenic foods from my diet, like dairy and soy. I started drinking oat milk instead.

But Mete was still having symptoms. I took him to Maryland to see my family. We attended my friend’s son’s birthday party and he had another set of massive blow outs. I brought blankets with us whenever we visited people, so he could sit on them without ruining people’s stuff.

My husband got back from Turkey, and a few days later we met with the pediatric allergist. She ran a skin test on Mete’s back — the standard test for IgE-mediated food allergies. Immunoglobulin-E, or IgE, is an antibody some people produce when exposed to certain allergens. But nothing showed up. So then we went over Mete’s history. We told the doctor that Mete’s reactions were often delayed. He’d eat and then hours later he’d throw up. That’s when the doctor brought up FPIES, which stands for food protein-induced enterocolitis syndrome — a rare allergic condition in which the allergic reaction happens in the GI tract. Unlike IgE-mediated allergic reactions, which happen immediately after ingestion, FPIES reactions come on later. The allergist thought that was probably what Mete had.

FPIES isn’t well-understood. It didn’t get a diagnostic code until 2016, after years of advocacy from FPIES parent groups. As a result, it’s understudied. It’s thought to be rare, but some researchers believe it’s more common than we think. Diagnosis is made clinically, meaning based on patients’ history and symptoms, not on lab tests. Repeat vomiting episodes in a child who doesn’t have IgE-mediated food allergies can point to it. Neither one of us has food allergies, although I’ve always had a sensitivity to corn. We have no idea if my sensitivity has anything to do with Mete’s allergies, though.

The diagnosis was daunting, but we were relieved to be able to name what Mete was facing. Our next task: Figure out what he was allergic to. Mete’s allergist told us we would have to try foods one by one. Because of the severity of his reactions, she recommended that we try food and then take him to the emergency room parking lot, to see if he vomited. So for the next couple of months, that’s what we did.

On the painstaking process of learning Mete’s food triggers

We tried oats first because his vomiting episodes had begun right when we started him on baby oatmeal. Even after I started drinking oat milk, and not dairy, he was still having episodes, so I figured that was probably a big trigger for him.

We packed up the car, fed him some oatmeal, strapped him into his car seat and drove to the children’s hospital. It was a Saturday morning in the middle of winter. We were in the car with a baby with nothing to do. We tried to entertain him in the backseat, and walked him around in the stroller in the parking lot for a little bit.

Two hours passed; nothing. Finally I got out of the car to walk over to the Dunkin’ across the street from the hospital.

I crossed the street, and as soon as I looked back, I saw my husband, waving frantically. Mete had vomited all over his stroller.

We went into the ER and they gave Mete anti-nausea medication to stop the vomiting. Over the next several weeks, as we were doing his food trials, we became frequent fliers in the ER, and the staff there got to know us. A lot of them didn’t know much about FPIES, so we ended up educating them a little bit. We got great care there, but we had to be the ones to tell them what was going to happen and how they should react.

The next few months were exhausting. It also wasn’t cheap. Every time we visited the emergency department, we had a $250 copay. We were also exposing Mete to all the germs in the ED. We started wondering if we could manage his reactions at home.

The fourth or fifth time we visited, the physician who treated us had the same idea. “Do you want me to write a script for the nausea medication?” he asked. Mete’s allergist was okay with it. She still wanted us to thoroughly trial foods, and report his reactions to her so they were documented. But she was okay with us controlling Mete’s worst symptoms after they began. We were always worried about dehydration. Having a prescription for the medication gave us peace of mind.

On continuing to do food trials at home

It can take several exposures to a trigger food for an FPIES kid to react. Sometimes kids don’t react until they get a break from that food and are re-exposed later. After a lot of trial and error, we came up with our own protocol: If Mete doesn’t react to a food after ten tries, the food is probably okay. We also never trial a new food after 2 p.m.. I can’t sleep if I know there’s a chance he’ll react to something. We usually leave trials for weekends, and clear a whole day for it. You can imagine how tedious and time-consuming the whole process is for each food.

The older Mete has become, the harder it’s gotten to do food trials. It didn’t take long for him to figure out we were feeding him things that were making him sick. By the time he was around nine months old, Mete started to distrust food and get really picky. We found out he isn’t allergic to dairy, which is great and meant he could eat yogurt. He would also eat a few purees. But other than that, we couldn’t get him to eat very much or try anything new. Taste and textures bothered him. If we made our own butternut squash puree and there was a lump in it, he wouldn’t accept it. Before long, he was refusing everything. He’d feed the dog his food, play with it — anything but eat it.

Mete started losing weight, and I was worried all the time. We kept supplementing him with formula, and he was still having a lot of diarrhea. Around that time we figured out he had a soy allergy — and there was soy oil in his formula. So we had to cut that out, too.

Over time we have identified 17 safe foods for him to eat. By December 2023, we knew he was allergic to oat, soy, peanut, and sweet potato or apple; he reacted to a puree with both of those in it, so we’re not sure which one triggered him. We think he’s also allergic to rice and egg. He hasn’t vomited after them, but he tends to poop more after he’s been exposed to them through my milk.

On managing her own mental health

Until recently, we didn’t feel comfortable with the idea of having Mete in daycare. We didn’t want to risk him getting sick without us present. My husband is a college professor, but I work from home. We had a part-time nanny for a little while, but I was with Mete a lot of the time.

By fall 2023, we knew something had to give. Mete was walking and talking — he knew where to find me in my home office — so it’s very hard to get anything done with him around. I started calling around to daycares and found one with a solid allergy protocol that also happens to be close to the hospital.

Around the same time, I began to worry that Mete wasn’t putting on enough weight. He was still having chronic diarrhea, so I cut even more foods out of my own diet and lost some weight. My husband started worrying about me. “You’re starving yourself,” he said. I just had a feeling we still hadn’t identified something irritating Mete’s digestion.

Mehmet has ulcerative colitis, so we took Mete to a pediatric gastroenterologist, who tested his stool for inflammation — a sign of irritation. Mete’s levels were off the charts.

So I was right: Something was still making him sick. I was desperate to find out what it was.

On finding a major trigger

Fairly soon after, on New Year’s Eve, I gave Mete sunflower butter, and he vomited — a lot. Mehmet was in Turkey again, and I was in Maryland at my parents’. It was another scary one. I could see the fear in my parents’ eyes.

Suddenly things clicked. I’m a pescatarian, and I eat a lot of foods with veggie protein in them. Vegetarian-friendly foods like imitation meat often contain sunflower. Even though he had been drinking formula that contained sunflower oil without vomiting, it didn’t mean the sunflower wasn’t one of his trigger foods. I’d been consuming a lot of one of his triggers without knowing it.

On turning to breastfeeding as a supplement

We haven’t been able to find a formula without soy or sunflower seed oil in it, so Mete is totally off of formula. He doesn’t like cow’s milk, so that leaves breastmilk. He’s 20 months old and still gets most of his nutrition from nursing, so I can’t stop. At this point, I nurse him in the morning, pump twice at work, nurse him again when he comes home from daycare, and once more before bedtime.

Every time we learn one of Mete’s triggers, I cut it out of my diet and get rid of all the breast milk I have stored in the freezer. I’ve had to rebuild my stash a bunch of times.

Nursing can make you feel trapped. I’ve never been away from Mete. Whenever I’ve thought about it, it’s always been like, “Is this worth tapping into my emergency milk supply?” But I’d come around to the idea and at the end of last year, I started planning a weekend away with my sister. I was excited to drink and eat out at restaurants and enjoy myself. I was going to pump and dump.

Then, in January, Mete had the sunflower reaction, and I had to dump my freezer stash again. I wound up donating the milk to my cousin, who has a newborn who was having issues with formula. We shelved the trip, and I found myself mourning my independence all over again.

I’m always nursing or pumping, and Mehmet is always cooking. We even bought a second freezer to store leftovers and some of our meal prep. It’s exhausting. Some nights I wish we could just order a pizza and not think about it.

On deciding whether or not to have another child

I started seeing a therapist last summer to unpack some of my anxiety. Things are definitely getting better, but I’m still working through my emotions.

My husband and I each grew up with a sibling. Before we had Mete, we always pictured having two children. But we can’t consider having another baby until Mete is done breastfeeding. I’ll be 35 later this year, and my husband is 37. We don’t want to wait too long. Research seems to be showing that kids with FPIES are more likely to have siblings with FPIES. What if we have a second child, and that child has even worse FPIES? Not only could it happen again — it could be worse. I’ve heard stories from parents whose kids are three years old, and only have one safe food. I can’t even imagine.

We go back and forth. Sometimes I think we could be fine with just one child, and other times I feel like maybe we’re giving up, admitting defeat. I know it’ll be a perfectly valid choice if we decide to not have another child. But yeah, there’s a little bit of sadness there. We had a vision of having a bigger family, and it might not come to be.

But recently we did decide to go to Turkey as a family.We’re traveling to Istanbul in June for three weeks. Before we go, Mehmet’s family is going to hunt around to see what kind of foods we can get. We’re also planning on bringing a bunch of Mete’s special foods and flours and snacks with us, in Tupperware containers.We’ve rented an apartment, so we can cook. We’re looking forward to it — but we’re also a little bit nervous.

On raising Mete today

We don’t take a lot of chances on new foods with Mete, for obvious reasons. I’ve had to get really creative in the kitchen. I’ve been making him pancakes and muffins out of quinoa flour or banana flour, and he also really likes this new pasta we recently found that’s made out of millet. There’s a Facebook group I’m in that is great for things like that; whenever someone discovers a great ingredient for FPIES kids, they’ll share it. That’s how I found out about banana flour. Mete also loves cheese, but only crispy cheese, not raw cheese. He’ll eat bananas and watermelon and he’ll suck on a tomato, but won’t swallow it. We spend a crazy amount of money on groceries that end up on the floor.

My emotions are really wrapped up in him and how he’s eating. The days he eats well feel like a huge win. Every time he tries something and loves it I’m like, Oh, my gosh, please don’t be allergic! He gets a ten-course meal for every meal because we never know what’s going to strike his fancy.

When this all started, we felt a lot of frustration that there was so little information out there about Mete’s condition. At our lowest point, on the days when we’d be waiting around in the hospital parking lot after feeding Mete a new food, I’d feel sick to my stomach. I was so on edge. There have been stressful episodes. There was a span of a few days last year when he only ate a cracker.

But things have normalized a little bit now, and we’ve come to accept that this is our life. Mete goes to feeding therapy and we’re so glad to have professional help on our team. His gastroenterologist doesn’t believe he has inflammatory bowel disease, at least for now. And we’re really lucky: Mete is a great kid, and apart from his feeding issues, he’s developing completely normally in every other way.

I don’t know if it’s because he’s going to school and seeing other kids eat, or because we figured out he had an allergy to sunflower, but recently, he has started showing more interest in food. Suddenly he’s grabbing more pancakes, swallowing his food instead of spitting it out, asking for cheese between meals.

It feels like a weight is being lifted off our shoulders. Nothing makes me happier. I’m like, Anything goes, buddy. Take your greasy cheese to your playroom and have at it.