A mother’s intuition defies scientific reasoning… because it’s written in love, instinct, and an unexplainable knowing. When my second child was born, I knew right away that something was off. I was breastfeeding, and after each feeding he would become inconsolable. My first child would get gassy after feedings, but this was different. He wasn’t just uncomfortable. He was in pain.
I mentioned my concerns at his next checkup, and they tested his stool for blood. Positive. He was less than a month old. When you’re a mom and you hear “blood was found in his stool,” you immediately start to panic and blame yourself. Is my baby going to be okay? Is it my breast milk? Is it something I’m eating? The doctor told us he would need to switch to a formula that would be easier on his little belly. In that moment, I felt like I had failed as a mom. Like I couldn’t provide the nourishment I was supposed to give my baby.
We started on our formula journey: Gentlease, Alimentum… He had to be on each new formula for a full month before we could retest his stool for blood. I felt so hopeless, because in my heart I knew these formulas weren’t making a difference, but it was impossible to know for sure until 30 days had passed. I was told that’s how long it takes for the previous formula to fully leave his system. A month would go by. We’d test his stool. There would still be blood. We’d switch to a different formula. The cycle just kept repeating, and nothing was getting better. Eventually, we switched to EleCare and he got better. There was no more blood in his stool. He wasn’t in pain anymore. EleCare is given to babies with severe food allergies and GI disorders. His pediatrician told us he couldn’t have dairy or soy, and that we would revisit the issue when he turned one… but I was never given a why. No explanation for what was actually wrong.
That time was very hard. I learned very quickly that soy is in everything. Every food turned into a possible threat to my little boy. When he turned one, the pediatrician said it was time to start slowly re-introducing dairy into his diet. I was terrified. What if something happens? I don’t want to see my baby in pain. He was still so little. He couldn’t tell me what was wrong.
She told me to start by introducing “non-obvious” forms of dairy into his diet: foods that contained dairy, but weren’t straight forms like milk or yogurt. I gave him Auntie Anne’s Organic Cheddar Bunnies. He loved them. I was so happy to see my son try a food he had never had before… a food any little child should be able to enjoy without fear. Then a few hours went by, and I saw the same symptoms I had seen in the beginning. Inconsolable pain. I tried to reason with myself. Maybe his body was just getting used to the new food. He had gotten his vaccines that day… maybe that was bothering him. I told myself this was normal. But deep inside, I knew it wasn’t. I waited a few days and tried again. Same reaction. I knew in my mama heart this wasn’t normal. I called his pediatrician and told her what I was seeing. She said he probably still wasn’t ready for dairy yet and that I should start giving him dairy alternatives instead.
I started by switching him to soy milk. I’m lactose intolerant, and soy milk has always worked for me… but he had the same reaction he did to the crackers. Okay… soy milk was a no-go. Maybe he just wasn’t ready for soy yet, the same way he wasn’t ready for dairy. Next, I tried oat milk, thinking, Okay, this will work. No dairy. No soy. Just like before… I was wrong. Again, he had the same reaction he’d had to the crackers and the soy milk. I started to feel like this was just the way it was going to be. Then someone suggested Ripple milk: milk made from pea protein. I remember thinking, This has to work… he loves peas. Plot twist: no reaction. That’s when my mommy gears really started grinding. Not every food I introduced caused a reaction. So why was he reacting to everything else… but not this? My pediatrician didn’t seem concerned. But I was.
By this point, he was 15 months old. I took it upon myself to schedule an appointment with an allergist. I explained my concerns and described his symptoms in detail, and they decided to do an allergy skin test. I felt so relieved, convinced this would finally give us answers and tell us which foods were safe for him to eat. They pricked him with what felt like a million needles, and my poor son cried as I held him tightly. I knew the test was supposed to help him, but seeing him in pain made me second-guess myself. What if there’s nothing wrong? What if I’m imagining all of this? When the doctor returned about fifteen minutes later… though it felt much longer. My hopes were dashed. The results showed nothing. No allergies. How could this be? Was I imagining it? Was I going crazy? They ordered bloodwork just to be sure and told us to come back in two weeks. I went home defeated.
I went home and tried giving him “non obvious” forms of dairy again, trusting the test even though the results never quite made sense to me. Then, a few hours after he ate the cheese crackers, he had a reaction. How was that possible? The test said he was fine. I waited impatiently for our next appointment, clinging to the hope that the blood work would offer answers the skin test could not.
We finally made it to our follow-up appointment, my hope of finding answers hanging by a thread. We sat down with the doctor, and she said that the bloodwork came back normal. I nearly broke down and cried right then and there. I couldn’t understand why the tests were not aligning with what I was seeing. Then she continued. Your son has Food Protein Induced Enterocolitis Syndrome. She might as well have told me that my son had a deadly cancer in that moment. I had never heard of Food Protein Induced Enterocolitis Syndrome. I couldn’t even repeat it back because the words felt so heavy. She explained what Food Protein Induced Enterocolitis Syndrome (FPIES) was, and all of a sudden everything made sense. There was an answer, a name. I felt so validated. I knew in my mama heart that something was wrong. To have a doctor not only believe me, but put a name to what I was seeing was the biggest relief. That relief was short-lived when she explained to me what exactly FPIES is and what it would mean for my son.
Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food
allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests. Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food. Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger.
There are two ways that infants or children with FPIES might come to medical attention.
- The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms shortly after eating a food. There is a characteristic delay of 2-3 hours before onset of severe and repetitive vomiting and eventually diarrhea. The child may appear very ill and sleepy (lethargic), and may become pale or blue. When evaluated by a doctor, he/she may be found to have low blood pressure, seem dehydrated, and have blood tests that mimic infection (sepsis); which in some cases can lead to sepsis-like shock. Many infants who are eventually diagnosed with FPIES are initially suspected to have a severe infection or sepsis.
- The second common pattern of FPIES reaction symptoms occurs when infants who are ingesting a problem food (usually milk or soy-based formula or proteins in breast milk) as a consistent part of their diet might experience increasingly severe vomiting, diarrhea, and poor growth, possibly progressing to an illness mimicking a severe total-body infection. Please note that each child is unique and your child may experience their own range and intensity of these symptoms.
(SOURCE: https://fpiesfoundation.org/about-fpies-3/)
Introducing new foods suddenly became fear inducing. The only way to know if he was allergic to a certain food was for him to have a reaction. We knew dairy, soy, and oats for sure… but were there others? Yes. We soon figured out that rice also gave him the same reaction he had with the other foods. Honestly, I think there are more, but I still haven’t been able to pinpoint them. I stick to the same foods I know he can handle and never veer from those.
Living every day with a child who has a food allergy is very taxing. It’s something I took for granted with my first child. Planning meals every single night requires meticulous thought, and whenever we leave the house, I have to plan ahead in case we’re out during a mealtime. I never leave without a lunchbox packed for him with his favorite dinosaur chicken nuggets (PERDUE® Refrigerated Dino-Shaped Chicken Breast Nuggets), fruit, and an applesauce pouch. When we go out to eat, I have to speak with someone from the kitchen to make sure my son’s food doesn’t contain any of his allergens. Most times, I don’t even risk it and bring his lunchbox with us instead. It breaks my heart that my son can’t have these foods when my other son can. I don’t want to deprive my other son of his favorite foods, but I also don’t want my son to see others eating things he can’t and get upset. He’s only two, and I think he’s already starting to catch on that he can’t eat the same things other kids can.
I thank god every day for the doctors at the “Center 4 Asthma and Allergy,” and specifically Dr. Shah, for finally giving my son the answers we so desperately needed, and for validating that a mama’s intuition is always right.
I wanted to share this story for two reasons. First, I wanted to bring attention to this condition. I had never heard of FPIES before, and maybe if I had, it wouldn’t have taken fifteen months to get an answer. Second, I wanted to stress the importance of trusting your gut. My mama intuition knew something was wrong, even when the tests said everything was fine. I never gave up, never stopped fighting, and kept advocating for my son. If you are a parent with a child experiencing anything that feels off, trust your gut. Don’t back down. Keep fighting until you get answers. No one knows your child better than you do. You are their voice before they have one, and your love and advocacy matter more than you know.
Written by: Ashley Buffolino
a local Momee Friend from Long Island, NY
Follow her on Instagram : @ashleybuffreviewsstuff
