We became parents in the summer of 2008. Lucy was amazing… and exhausting.
My husband is active duty Navy, and had to leave very shortly after Lucy’s birth. The first few months were a blur of sleepless nights and moving several hundred miles away, alone with a baby to a new city. Being a first time mom, I didn’t know what was to be expected and what wasn’t. I was exclusively breast feeding, and it seemed that I was doing so around the clock even as she grew older. Lucy never developed a sleep pattern, and woke many times throughout the night. `She had diapers that were end-to-end covered in mucous several times per day and had unexplained fits of screaming. Lucy was being seen at a military clinic for ‘well’ check-ups, and we saw a different doctor at each appointment, so there really wasn’t anyone that could track problems from visit to visit. Looking back on pictures, there are hardly any of her smiling. There are hundreds of photos taken during her first year and only a handful have a happy looking baby.
We started grain/veggie/fruit solids without too much issue. At around 10 months old, I weaned to a dairy-based formula. That’s when it turned south. Sleep that had previously been bad could only be categorized as horrid, and the number of bowel movements increased tremendously. She arched her back often and woke up screaming. Then she developed a diaper rash that looked like a burn- It was raised and there were patches of skin the size of half dollars just missing, and she bled all over the place. The screams of diaper changes haunt me to this day. When I took out the diapers and wipes to change a diaper, Lucy started crying and screaming in anticipation of the pain that was to come. She cried so hard at diaper changes that she shook for minutes after the diaper was changed. We both cried at every diaper change, and it kept getting worse.
I’ve always known my own mother has had an ‘odd’ issue with food all her life and there is a list of things as an adult she cannot eat without becoming very ill. On a phone call to her several weeks in to all this madness, she suggested that perhaps Lucy had a problem with dairy. I thought she was nuts, but I was in such desperation that I went out and purchased a can of the soy version of her formula. Within 48 hours I had a different baby. She started sleeping. Her diaper rash wasn’t getting worse and her poor bottom was starting to heal. Amid the madness, there were some solids I had given her that appeared to give her hives. I wondered if she had an actual allergy to dairy.
After all, there’s only one kind of allergy, right?? And her reactions were so violent it was the only thing that made sense to me.
We were referred to the Allergy Department of the military hospital for testing. I explained what had been going on, and that I had seen unexplained hives on occasion. The allergist gave me a verbal pat on the head and sent us down to have Lucy’s blood drawn for a RAST. A couple weeks later, I received a call from the doctor saying ” Great news! Lucy doesn’t have a dairy allergy; you can go ahead and feed her whatever you want to”. Huh? I returned the call and spoke with the allergist, reiterating what had been happening with Lucy. You could almost hear her roll her eyes on the other end of the phone as she replied to my insistence “Well, since you know so much about allergies, you just go ahead and do whatever you want to do”.
After that, I decided that I was on my own, and diligently kept dairy removed from Lucy’s diet. Those unexplained episodes with hives? We later learned the hard way that she has a peanut allergy and the items I gave her must have been cross-contaminated with peanut products. After all this with Lucy, I did some research while pregnant with baby #2 regarding allergies and intolerances in subsequent children. Most of what I was reading pointed to a high likelihood of our second child also having allergy problems. Armed with this information, I had it in the back of my mind that eliminating dairy from my diet may become necessary and was going to keep a diligent eye out for similar problems to Lucy’s.
Olivia was born in the spring of 2011. She was beautiful. I planned on breastfeeding and she latched on in the hospital like a champ, eagerly nursing. The first three days were fine. Normal even. It was also on the third day that my milk came in. Within 24 hours of her having my milk, she began arching and crying when I tried to nurse her. By the evening of that day, she was beginning to look very jaundiced and was rather lethargic. I ended up in the pediatric ER with her because of it, and it was a serious struggle to get her to feed for weeks. Looking back, its easy to see that she refused feedings because she was in pain.
By about 2-3 weeks of age, I was noticing more subtle signs that she was growing increasingly irritable and seemed to be in pain. We never really had “normal” seedy bowel movements that breastfeeding babies are supposed to have. And at this point, it had become obvious that her diapers were filling with mucous. Those bowel movements were loud and had an extremely foul, sour odor. Thinking to myself that this must be dairy just like Lucy, I cut obvious dairy out of my diet. This gave some improvement, but not much. I proceeded to cut all dairy including hidden dairy and cross-contaminated products. While this helped, Olivia had developed a cycle of nursing for a short time, falling asleep, waking in pain and screaming, then needing to comfort nurse again to get back to sleep because she was exhausted from shear lack of rest. This cycle of hers was essentially a round the clock thing. I was exhausted and so was she.
Around 4-5 months old is when the blood showed up in her diapers. We were still seeing 8-10 diapers full of green, foul mucous per day; but then the blood came. Almost all diapers contained very visible globs of blood and it was terrifying. I had been asking our pediatrician all along if things were normal- because I had a gut feeling that something was seriously wrong that far exceeded a dairy intolerance. The pediatrician did a fabulous job of convincing me that I was borderline crazy and being paranoid. She even said “sometimes babies just have blood in their stool. She’ll grow out of it”. Olivia’s weight and height had always been at the high end of the charts and she was meeting her milestones. She didn’t look ill at all, so the pediatrician thought things were just fine.
All the while, I was beginning to feel a bit unglued. I had a husband who was deployed, a 3-year-old, and this baby that never slept and pooped blood. People asked me why I didn’t just give her formula. The thought absolutely terrified me. If she was reacting like this to my breast milk, I thought there was no way formula would be ok. The time I spent planted on the sofa nursing Olivia became mommy study time and I spent countless hours trying to figure out what was going on with my sweet girl. The next logical thing to eliminate from my diet was soy. Having both dairy and soy out of one’s diet is no picnic. I did it, though, and the blood seemed to resolve within a couple weeks. If there was even the slightest slip-up, however, we were right back with it. I have clothing that was blood-stained beyond keeping because the bloody mucous diarrhea leaked over an outfit. I stumbled upon a post somewhere online that mentioned silent reflux. Many of the things that Olivia did seemed to fit the diagnosis. Immediately calling the pediatrician, she condescendingly agreed that it could be silent reflux and gave me a script for Zantac – I think just to get me off the phone. The first dose seemed to help Olivia be more comfortable. After that, she appeared to get worse. Her reflux was more painful and some of it resulted in her spitting up. Another call to the pediatrician resulted in a prescription for compounded prevacid. For a week or so it seemed to help some with her waking in pain, and wasn’t comfort nursing as much. I thought maybe things were coming under control. Man, was I wrong.
Over the following weeks I cut obvious corn from my diet as well as beef. This seemed to help to a degree, so I kept those out in addition to dairy and soy. Some of the reading I did had parents recommending baby oatmeal vs rice cereal for a first food because it was better for babies experiencing reflux. The first time Olivia ate it she was fine… well- normal for her from what I could tell.
The next time I attempted to feed her baby oatmeal she ate about a teaspoon and refused anything further. She fell asleep not that long after eating. Approximately two hours after the oatmeal, she woke from sleeping with a panicked cry that made my momma heart skip a beat. Picking her up, an odd look washed over her and I heard a gurgle. Then the floodgates opened. I am unsure of the number of vomits that followed. But they were projectile and rapid-fire.
It was very odd because there was no retching sound with the vomit. It seemed to be propelled by her gut with fierce force. When she was done, she became very sleepy. I wondered if the oatmeal had some dairy or soy contamination or maybe even was just getting sick. After that episode I noticed that she was especially fussy around lunch time every day and was often spitting up and had horrible acid-burn like diaper rash. I waited a few weeks and went back to only breast milk before trying rice cereal. I researched the company, and felt confident that it would be fine. I mean- seriously- who can’t eat rice? As far as I knew, it only helped settle a stomach. Olivia was not at all impressed by the rice cereal and might have ingested 1/4 teaspoon, maybe. It was a minuscule amount. After falling asleep with her nursing, we woke about 2 hours later covered in vomit. I hadn’t even heard her- and she was right next to me! Picking her up I saw that she had a blowout diaper that covered her from neck to ankles. She continued vomiting the first few minutes I had her up, and then it seemed to stop as quickly as it had started. I got myself, my bed, and Olivia changed and cleaned up. I fastened her sleeper and picked her up. She went limp like a rag doll. There was nothing behind her eyes and she wasn’t keeping them open very well. Her color was gray. This was absolutely horrifying to see.
Now, you have to understand that the pediatrician up to this point had done a number on my confidence to discern a serious problem from one that wasn’t. I was so tired I felt delirious. I was paralyzed sitting there- in the dark, at night, not knowing what to do. Olivia managed to nurse for a few minutes and fell asleep. I tried to fall asleep and did for a short while. But I woke to find that she was clammy and her breathing was weird. Getting up with my laptop, I feverishly started searching for why a baby would projectile vomit rice. Within a few searches of variations of those search words, I kept seeing FPIES. There were a few blogs I found after searching FPIES- and their stories were eerily familiar and the more I read the more convinced I became that this was the beast we were dealing with. I also stumbled upon the newly live FPIES Foundation website. I read the description of what shock following an FPIES reaction looked like, and I immediately had a sinking feeling knowing that this was what Olivia experienced after rice and oats. One of my searches yielded links to the Babycenter FPIES group, and I spent hours reading through posts. By a day or two later I was typing up a thread of my own desperately seeking a local specialist familiar with FPIES. The mommas there came through and I got a recommendation for an Allergist not too far away, and made an appointment. I also read about babies reacting to foods that had been “failed” via direct ingestion that had once been fine. The noon-time insanity started making sense- because I was eating a massive bowl of oatmeal for breakfast every morning. I also cut out rice at this point.
Even with all these things out of my diet, Olivia was still a mess. Not sleeping, wanting to constantly comfort nurse, experiencing bad reflux despite being medicated, and had acid-burn-like diaper rash.
By the time we showed up for the allergist appointment I must have looked like a train wreck. I certainly felt like one. I had this sick child that didn’t look ill, and had no idea how to help her. The allergist confirmed my suspicion diagnosing FPIES following a round of testing to rule out typical allergies to the foods she had for sure reacted to. We agreed that we would start on an elemental formula, ditch the prevacid, and wean from breast milk.
Elemental formula seemed to be helping her immensely compared to breast milk, and we weaned to it totally by around 9 months old. It took over a month for bad diapers to resolve, but Olivia was sleeping better and was happier.
Food trials over the next year almost feel like a blur. There were some passes, and many fails. Our fails were mostly chronic-type reactions, though. Not the classic vomiting reactions. During the process of learning the ins and outs of FPIES, it became clear that we had a family history of FPIES and other non-IgE allergies. In fact, we are quite sure that my mother also had/has FPIES. There are things to this day that she cannot eat without violent, delayed-onset vomiting.
Recently, at two years of age, we went off elemental formula entirely. In the past two months, I’ve seen a drastic change for the better. I think that Olivia was reacting on a mild level to the elemental formula. We saw a specialist who agreed that this was possible (something our other doctors were not willing to admit) to react to an elemental formula, and that we probably had enough “safe” foods to try without it. We needed the formula at the time, but I am quite sure looking back that she was, in fact, not completely tolerating it. We have not had a single chronic fail since taking it out of her diet.
All that brings my family to now. We suspect Lucy had FPIES or other non-IgE allergy to dairy- we may never have a true diagnosis for her in that respect. Olivia is two-years-old and has, as of today, 28 safe foods (including spices and oils). She is still very sensitive to many things and I have to be diligent to keep accidental ingestions from happening. But she is happy and otherwise healthy. Given our family history, our specialist (and I) feel that we are most likely in this for the long-haul, at least for some of her triggers.
I’ve learned two main things along this FPIES journey. The first is that you don’t need to do this alone. I don’t know where I’d be without the support of the online FPIES community. The help and insight I’ve gained has been invaluable. This is a very draining thing to deal with. Its expensive, and socially isolating to keep an FPIES child safe and nourished. We’re a culture where gatherings revolve around food, and even the smallest amount can cause days or weeks of pain and misery. There are food proteins found in non-food items like personal products and art supplies. Everything requires some level of research to determine if it is safe to have around Olivia. There are plenty of things we just don’t do anymore. Travel requires a massive amount of planning and pre-cooking along with access to a full kitchen when we reach our destination because I have to cook everything my kids eat. Its very difficult at times to deal with friends and family who don’t understand the severity and how all-encompassing this is. Finding the support of fellow FPIES parents is key- some days knowing you’re not alone in your feelings is the only thing that maintains some level of sanity.
The other big lesson I’ve learned through all of this is that I need to trust my instincts. Mothers were given the gift of intuition, and we need to follow it. Doctors are human. Some are fabulous and some give advice that is downright dangerous at times. Stick with the great ones, and ditch the unhelpful. I’ve learned that if I don’t advocate for my children, nobody will.
I don’t know if FPIES will always be a part of our everyday lives, but it will always be part of our story.
Page published: May 25, 2013. Copyright © 2012,The FPIES Foundation