Our FPIES Journey:
A Tribute of Gratitude
By: Anna D’Ambra
“We must find time to stop and thank the people who make a difference in our lives.”– John F. Kennedy
Our story began on December 10th, 2018, when our then 6 month old daughter, Adelina Rose Carestia ate a tablespoon of oatmeal baby cereal for breakfast. She woke up smiling from her morning nap around noon, slurped down her usual bottle of formula and then immediately projectile vomited her entire bottle. Vomiting was unusual for Adelina. I didn’t make anything of it, until she continued to vomit on and on. She had ingested that tiny bit of baby oatmeal about 4 hours prior to the vomiting. I cleaned up the mess and she appeared hungry, so I gave her some more formula, but every time she would vomit; and this time, vomited on and on until bile. I then tried to put her down for a nap as she seemed exhausted. I was thinking maybe she had caught a case of gastroenteritis, so once again didn’t make anything of it and planned to keep her hydrated.
I was starting to get my dinner prep started and of course the baby monitor was in front of me. Adelina vomited again, projectile in her crib while on her back. I shut the stove off, ran into her room, sat her up and she continued to vomit constantly several times until bile. She was dry heaving, and it was so heartbreaking to watch. My husband, Charles, was at work but I had notified him, my son was at daycare and I was alone with Adelina, who started deteriorating. And then her eyes rolled back, she was very pale, and she became limp. I was yelling her name, tried to arouse her, but she wasn’t responding. She was breathing and there was a pulse, but her eyes were closed and she was unresponsive. I carried her in my arms, ran to the phone and dialed 9-1-1.Simultaneously, I quickly called by husband who was on his way home from work but stuck in traffic, of course he was in a panic too. I was crying hysterically, and though I was a nurse for many years, some of which had been in an adult Emergency Department, in that exact moment, I was a mother. Adelina was a part of me, and I was holding a lifeless baby in my arms. What on Earth was happening??? Within minutes, the firemen arrived and subsequently the Urgences-Santé paramedics. By the time they arrived, Adelina’s eyes started to open, she was weak, not smiling as she normally would but she was awake. I sat her upright in a baby chair as I explained what had happened to the paramedics and they assessed her at the same time. My heart was racing even more because their equipment wasn’t working, and their blood pressure cuff was too big for her arm and they couldn’t assess her accurately. I kept explaining that Adelina had no known medical conditions, was a healthy baby and that the ONLY thing different that day was the little bit of baby oatmeal she had eaten. I was convinced that the oatmeal contributed to all this, it was my gut feeling. They brushed me off and said no no, it’s not that, it’s likely just gastro [gastroenteritis] and that she had lost a lot of fluids and her blood pressure had dropped. I explained that she had no fever, no diarrhea, and that no one was sick. They recommended I have her seen in a pediatric Emergency Room (ER) due to her brief period of altered consciousness. I signed papers that I would bring her in. I was waiting for my hubby and son to get home. I quickly gathered everything I needed for our trip to the ER, while monitoring her closely.
When my husband got home, he tried giving her milk [formula] and she willingly slurped it down, then once again she started vomiting on and on. We brought our son to my in-laws’ and we drove to the hospital and I sat in the back seat with her. We went to the Montreal Children’s Hospital, where I explained the entire story to the triage nurse. She told me to keep her hydrated and give her more formula while waiting to be called, and once again she projectile vomited everywhere in the waiting room. It was 20h00 now and she couldn’t hold anything down, she wasn’t wetting her diapers and I was starting to get concerned.
We finally got called in by the doctor, who assessed her, and didn’t believe the oatmeal was the cause and told us to return to the waiting room and give sips of an oral rehydration solution every 5 minutes and see if she could keep it down and we had to do that for an hour. She highly suspected that it was gastroenteritis as well. I kept challenging the physician, because I just knew it wasn’t. We waited in the waiting room, did what we were told, didn’t give her any formula, just sips of the oral rehydration fluid and thankfully, she kept it down. She was reassessed and sent home. They suggested giving her a break from food and restarting in a few days. So we did.
The next morning, she was back to herself, as though nothing had happened. I didn’t feed her anything but her formula for that week. About a week later, on December 16th, I gave her less than a tablespoon of baby rice cereal this time. Exactly 4 hours later, she had projectile vomiting while sleeping on her back. This time, my husband was home to help. She vomited on and on until bile. This time, we didn’t bother going to the ER. We took care of our daughter using the same method. We let her vomit until bile, and then slowly gave her sips of oral rehydration solution as tolerated. Now I knew there was something seriously wrong. The next morning, I booked an appointment with her pediatrician, who happens to work at the Montreal Allergy and Asthma Clinic. I saw her later that morning. I explained what had been going on and that it was reproducible and that those were the only 2 foods she had tried. She nodded as I explained our story. She immediately instructed us to stop feeding her oatmeal and rice cereal. She explained that this was a rare food allergy called Acute Food Protein Induced Enterocolitis Syndrome (FPIES). She quickly phoned her colleague, a pediatric allergist and immunologist, in the same clinic and explained our story. She accepted to see us right away. She assessed Adelina, listened to our story and confirmed an FPIES diagnosis. She explained to us that this was a non-IgE mediated reaction of the immune system and that skin tests would likely be negative and that this diagnosis was made based on her symptoms and clinical presentation. She did have Adelina skin tested just in case but of course they were negative, meaning she didn’t have an IgE-mediated allergy, hence no Epi-pen required. She told us that this allergy is rare and that most children grow out of it by age 3. She told us not to feed her any of her trigger foods until she was 3 years old, and at that time we could discuss about her oral challenge strategy. She explained that very little information was available about why and what causes FPIES and that each child is different. FPIES has no pattern, any food could be a trigger and so we had to focus on Adelina’s case. I was so anxious and nervous but she was calm and reassured me that I should keep trialing food. She suggested we start with orange veggies, and for iron perhaps lamb. She gave us a letter for the ER, if we ever had to take her, explaining that she has FPIES that could mimic a gastro, and that the treatment would consist of intravenous hydration, intravenous Solumedrol and Zofran. So off we left. I had a knot in my stomach and heartbroken and sorry for my daughter who wouldn’t be able to enjoy Mum-mums and rice snacks, Cheerios and all the fun stuff toddlers enjoy. I was also so disappointed that a pediatric hospital dismissed us and didn’t consider a possible intestinal allergy.
We continued on with trials, but every trial took a toll on me and my husband. We never knew if that spoonful would put her into hypovolemic shock. Trials were stressful and we watched her like a hawk. After 6-8 hours post ingestion, we felt a little better but continued on with the same food for several days. I kept a detailed journal. I would drop my son off at daycare, rush home to give her a new trial food as early as possible. The sad part for me was that I was treating her like a patient and not like my baby. I was trying to research and learn more, but there just wasn’t much out there. I had joined a few FPIES Facebook groups, looking for support, but every child was different, some worse than others. Most mothers were in despair and the bad and sad news outweighed the success stories. I joined those groups to help me cope and network with mothers that were living the same nightmare but instead I was feeling worse. I started having trouble trialing higher risk foods alone, and needed support.
On February 25th, 2019, after her Baptism had passed, we decided to trial Barley baby cereal. This time my parents were at our house for support. This time 2 hours later, during her nap, we heard her cough and she was projectile vomiting again. She vomited on and on about 20-25x to bile. She was weak and limp again. My parents were heartbroken to see her in that state as well. We managed her as we had done the previous times. This one was worse than her oatmeal reaction. This time she had abnormal diarrhea too. In retrospect, we should have taken her to the ER. My parents and I held her in our arms for hours. The next day she had a decreased appetite but she was able to hold down food.
On March 28th, 2019, on day 4 of an egg yolk trial and day 1 of a mango trial, she woke up at 4am vomiting to bile. She couldn’t hold anything down for most of the day. She had abnormal diarrhea. This time her reaction was slightly different. She had intermittent vomiting. It wasn’t clear to us if this was gastroenteritis or chronic FPIES. We consulted her allergist who wasn’t sure but suggested we not give her those foods and retrial them at a later date.
On April 25th, 2019, after our family vacation to Punta Cana (DR), I decided to be bold and feed her an egg with the egg white. Exactly 3 hours later, again, she had her classic FPIES reaction. We also consulted a pediatric gastroenterologist at the Montreal Children’s Hospital and a pediatric nutritionist. They made us feel like we were on the right track, and that they were there as support if needed. They were impressed on how we persisted with trials and her variety of food. We had built an entourage of specialists as a support network so that we could focus on being parents. They also confirmed that FPIES is rare, there is no pattern, and that there are no experts because it’s rare, and there is little research, because it has become an actual diagnosis only a few years ago.
Our biggest wins were when she passed her corn, wheat, soy, dairy, trials etc. Today at 15 months, she has enough safe foods to stop counting and only a handful or trigger foods. So today we focus on all that she can eat and not on what she can’t eat. We have found alternatives and have become creative. We refused to live in a bubble and we continued to maintain a social life. We vacuum the crumbs off the floor if there are crumbs of her trigger foods, supervise her closely, bring her food in her little lunch box etc. We are allergy parents and any allergy parent can empathize. We had to learn to accept her FPIES, and I believe we have become experts about “Adelina’s FPIES”.
We would like to take this opportunity to thank ALL those who have been a part of this journey and who continue to be a part of it (because we can only re-trial her trigger foods at 3 years old). We thank you for all your support, guidance, but mostly for helping us achieve a sense of normalcy in our lives. However, a very SPECIAL THANKS to: our daycare. This daycare not only accepted our daughter Adelina, but the director worked tirelessly for months, all hours of the day and evening to help with Adelina’s integration and to make their environment safe for her. They gave use peace of mind by accommodating Adelina’s every need regarding meal or ingredient substitutions and alternatives, meal preparations and serving. They pay special attention to make sure the floor is always clean. She has a designated high chair labeled with her name. We organized an in-service, where I educated all the staff (educators and kitchen staff) about Adelina’s rare allergy and how to manage it in the event of an accidental ingestion and all steps to take. Trials were and are always done at home. If she has never had a specific food, they didn’t give it to her. This daycare gave an allergy mom and dad, peace of mind while at work. I returned to work worry-free and placed my full trust in this daycare. Adelina has been happy, healthy, and thriving thanks to her educator and all who have taken care of Adelina. I will never forget the mornings that I dropped off my son, and would bring Adelina in her infant car seat, with tears in my eyes because she had had a reaction, or because I was worried or scared. I got hugs and ears that listened and positive encouragement from the staff and other parents. I will never forget each and every one of them. Our lives are blessed with amazing people and just know that their kindness and warmth actually helped me cope and gave me strength when I was running low on fuel and was in despair.
This food allergy is “Rare but Real” and awareness is much needed. I would like to conclude, that gratitude is most powerful when shared and that “alone we can do so little; together we can do so much.” – Helen Keller. We are touched beyond words, grateful, and thankful.
The Carestia Family
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Page published: September 25, 2019. Copyright © 2012,The FPIES Foundation