Bites of Caution: How Starting Solid Foods Turned Sour

Baby’s first foods are an exciting and fun milestone, but for some moms like myself, the journey can unfortunately escalate into a scary and anxiety-inducing experience. Shortly after introducing my son to solids, we learned that he has food allergies. However, his allergies weren’t the typical IgE allergies that we were somewhat familiar with. After several scary vomiting episodes, one 911 call, and visits to two different allergists, my son was given a  Food Protein-Induced Enterocolitis Syndrome diagnosis. 

Food Protein-Induced Enterocolitis Syndrome ( FPIES) is a rare food allergy that presents differently than typical allergic reactions. While people with IgE allergies can range from mild to severe symptoms, the time in which those symptoms appear is shortly after exposure.

FPIES is characterized primarily by its delayed reactions, typically 3-4 hours after ingestion, which makes it hard to track which foods are causing the reaction and also leads to misdiagnosis. The GI tract attacks the triggers as they’re being digested and tries to eliminate it in any way that it can, resulting in multiple bouts of vomiting and/or diarrhea. The extremes of this type of reaction lead to severe dehydration and shock.

                        
We started my son’s food journey like many other parents do. My son was breastfed until about 6 months when I transitioned him to hypoallergenic formula. Before that at about 4 months old, we started noticing blood and mucus in his stool. After consulting our pediatrician and doing some research of our own, we concluded that he very likely had Milk-Soy Protein Intolerance (MSPI). In some ways, getting this diagnosis was a relief. He had always been a colicky baby and this finally gave us some answers to what was the cause of it. However, it also came with a lot of guilt and sacrifice too. I felt immensely guilty because it was my breastmilk he was reacting to, so from that point on, I cut and continued to cut out foods from my diet that seemed to be causing him discomfort. First, it was eliminating dairy. Then, it was soy. We noticed similar issues when I had egg and peanut products, so those came out of my diet too. It felt like I was eating almost nothing, but I was willing to do it to extend my breastfeeding journey just a little bit longer. For a while, his symptoms started to improve, but then, they started to worsen again. We couldn’t nail down another trigger, so we decided to make the switch to formula. I held out as long as I could, but ultimately, it was for the best.

After struggling with breastfeeding and then paying an arm and a leg for hypoallergenic formula, we were excited to finally make the transition to solids. We started with purees and made sure to introduce one at a time. Things were going well at first.

                  

He ate sweet potato, green beans, carrots, chicken, turkey, and more. Then, one day, we tried peas. He didn’t seem too enthusiastic, but hey, they’re peas. That night he was more gassy and fussy than usual, but sticking with our routine of trying new foods, we let him try it again the following day. This time, he vomited almost instantly after ingestion, and we observed what appeared to be a hive on his back. From that point on, trying anything new was nerve-wracking, and I held my breath each time we watched him take his first bites of a new food. Things went okay for a little bit. A few weeks later, however, we introduced him to peanut as advised by our pediatrician. He had the smallest amount, probably a ¼ tsp, and then, we watched and waited. No immediate reaction.

We were so relieved! Fast forward about 8 hours later, and we experienced one of the most terrifying nights with our baby.

We were getting him ready for bed, and he started acting a little strange. Then all of a sudden, he started projectile vomiting. He continued to vomit several more times, and as we observed him, we noticed he increasingly became more and more lethargic. As new parents, we didn’t know what was going on. He had no fever, but was in daycare, so he could have certainly caught something. Was it the peanuts? He had eaten them so long ago that it didn’t seem likely, but we didn’t rule it out. Eventually, he stopped vomiting and seemed to be recovering. It was pretty late into the evening, so we opted to let him sleep after getting some fluids in him. I’m pretty sure I slept on the ground in his room that night so that I could ensure he was going to be alright. The next day we called his pediatrician’s office, and they recommended we continue to monitor him and assured us he would be alright. They also thought it was likely just a bug he had caught. Later that day, he had another vomiting episode. Still no other signs of the flu or any other sickness, I was convinced it was related to the peanuts, but the doctor said that with his reactions being so delayed, it made it highly unlikely. We continued to proceed with caution as we navigated additional solid foods, avoiding peas, peanuts, and mango (another culprit we encountered along the way).

At this point, I wanted more answers. Because of the MSPI symptoms he experienced early on, I knew there had to be something going on. I scheduled an appointment with an allergist, and we waited. Then, one day several hours after having eggs and avocado for breakfast (a food he had eaten several times before), he had one of his worst reactions. He had been eating lunch and then suddenly, he stopped. He started acting unusual and then the multiple bouts of vomiting started. He became scarily lethargic, and then, I noticed his blue lips and fingertips. At first, when I saw him turning blue, I thought he had choked on something that he had been eating. In a panic, I started doing back blows as my husband called 911. By the time they arrived, he was regaining color and becoming more alert. They checked him out, took his vitals, and said he was okay. They offered to drive us to the hospital but didn’t really think it was necessary. Whatever he was experiencing, he seemed pretty well recovered by the time they arrived. In that moment, it was hard not to feel like an overly cautious new parent. We took their advice and stayed at home while he regained his energy and usual demeanor. Despite this, it’s safe to say that we were terrified and even more perplexed.

We eventually got in to see the allergist, and they immediately did allergy testing for the foods we thought were potential triggers: peas, mango, egg, avocado and peanuts. His skin test came back positive to pea, borderline positive to peanut, and negative to avocado and egg. The allergist ordered a blood test as well which came back negative for peanut and mango among others. This should have been a relief that so many came back negative, but I wasn’t convinced. The allergist said that we could schedule a food challenge in order to have him monitored while we reintroducing peanut so that we didn’t have to do it alone. She then encouraged us to reintroduce the other foods he tested negative for at home: mango, egg, and avocado. We took her advice and resumed giving him egg a few days later, thinking it might be okay since he had successfully eaten it a few times before experiencing a reaction. About 2.5 hours later, we had another scary reaction like we had seen before. Going through this with a child who can’t even talk and explain what he is feeling is heartbreaking for a parent and nothing I would wish on anyone. 

Safe to say that at this point, we were incredibly defeated and anxious when it came to introducing solids. I was living in a state of panic whenever we started to try something new, knowing we had to continue to expose him to a variety of foods in order to make sure he would be able to get a well-balanced diet. On top of that, his peanut food challenge was looming over our heads. A food challenge consists of giving the child a small amount of the suspected trigger, observing him for a few hours to make sure there’s no reaction, and then sending them home. The problem for us was that our son’s reactions were pretty much never immediate. As we got closer and closer to the appointment date, I kept thinking, why would we knowingly expose him to something we’re pretty certain is a trigger, wait for a few hours, and get released only to go through this terrifying experience at home? It didn’t sit well with me. 

It was the night before his appointment, and I couldn’t sleep. I was scrolling through my phone in bed, googling his symptoms, trying to find something that would give me peace of mind. That’s when I discovered FPIES. I read a few articles, and it was like someone was describing my son’s reactions to a tee. I was immediately relieved and also angry. Why hadn’t our allergist mentioned this? In the little research that I did, it became clear that testing for IgE allergies was not at all the same as testing for FPIES. In fact, it made all the more sense why he tested negative for so many of his suspected triggers. There are currently no skin or blood tests that can accurately detect FPIES allergies. At that point, I made a decision. I was not going to subject my son to a food challenge without all of the information I needed first. First thing in the morning, I called the doctor’s office and explained that I wanted to address some concerns with his allergist prior to the challenge, they said that would be fine and that we should come in. We packed everything up: peanut powder, food to mix it with, water, milk, and lots of toys to distract him in case we did go through with the challenge. We arrived, uncertain about how the next few hours would go. Then, almost immediately, we were told that they wanted to start the challenge right away and that his allergist wasn’t available until later in the challenge. Right then, I made another decision. He would not go through with this challenge. 

We left, went home, and I dove into more researching. After missing our appointment, I followed up with his allergist and explained what I found. She agreed with my findings and concluded that it was very likely my son had FPIES. While that was somewhat validating, I knew I needed to find someone else to treat him. I am not a doctor, and yet, I was finding more answers to our questions through my own research. After some additional searching, we found a new allergist, one with speciality knowledge of FPIES. Two minutes into hearing me explain the characteristics of his reactions, his new allergist concluded that yes, he did have FPIES. During that same appointment, she provided us with so many resources, including emergency letters and action plans so that anyone treating him would know what FPIES is and how it needs to be treated in order to prevent a potentially life-threatening situation. 

Unfortunately, his diagnosis meant that in some ways our journey was just beginning. She also suggested a peanut food challenge, but this time, it would be a 6-hour challenge in the ambulatory infusion center so that there could be a quick response if he started to have a reaction. They book food challenges several months out, so we made an appointment and continued to navigate new food trials at home. I looked for as many resources as I could, finding the most helpful resources from the FPIES Foundation and the FPIES Handbook I bought from Amazon. We started tracking everything related to new food trials: what time he ingested the food, the amount, any symptoms we noticed, how long after ingestion those symptoms were observed, and more. Then, we would do this over and over until he had several exposures without any reactions. Another tricky thing about FPIES is that a child can ingest a food several times before their first reaction. This is why our son was able to eat eggs a number of times before he started exhibiting symptoms. This makes it hard for any new food to feel safe for a long time. 

 There was a long time when I felt completely overwhelmed by his FPIES diagnosis. Scared to subject him to another terrible reaction, I took as much caution as I could without completely denying him opportunities to try new foods. As he got older, we had to coordinate with his daycare to ensure that he wouldn’t be exposed to any of his triggers. We sent food substitutes, closely examined the chef’s recipes, offered alternatives, and hoped that no one accidentally gave him something they shouldn’t. We did not allow him to try any new foods at daycare, so there was mounting pressure to continue trying them at home in order for him to have as many safe foods at daycare as possible. We’re about 1 ½ years into his FPIES journey, and while it has gotten easier and he has way more safes than he started with, it is still difficult to navigate. Luckily, we have amazing people in our lives who are willing to alter plans and food options to make sure that our son can eat “normally,” but the anxiety over when the next reaction will be is still there. Children can grow out of FPIES, which gives us hope, and today, 2 of his 4 original triggers are safes. However, he’s added a new one after an accidental exposure at daycare. Because of this, it’s hard to not always be a little bit on guard. 

It’s my hope that by sharing my son’s story, I help others who are feeling just as lost, alone, or uninformed as I once did. Motherhood is a wild and sometimes scary ride, but my hope is that everyone finds the stable structure they need to make it through the steepest drops and stomach-turning corkscrews. Because without that, I don’t know where I’d be. 

For more information about FPIES, please visit the FPIES Foundation’s website, order The FPIES Handbook, or see our free resources in our “Mama Resources” section. You can also find a few of my FPIES materials in my Etsy Shop as well: https://mamaminifirsts.etsy.com/listing/1749185175. 

 

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