From Birth to Diagnosis:
Maybe the early signs should’ve been red flags: bringing him home from the hospital and having blistering diaper rash, eczema that started in the first week of life, gassiness, and explosive diapers. But I’d been through all of that before, our first born had milk protein intolerance with allergic colitis at 8weeks old, colic from 3-16weeks old and reflux with throwing up until he was 19 monthes. We had had our share of crying, gassy days filled with projectile vomiting. So I wasn’t alarmed when I began to see all this again. I did see all of this in our 3rd son, but he was only milk protein sensitive. So, I thought I was going down sensitivity road again.
It was approaching time for me to return to work and so trialed him on some formula, for supplements as needed (unsure how my production would hold up). This brought on projectile vomiting from the first ounce. We chalked it up to weird coincidence and tried another ounce in a week or so, only to have more vomiting. Based on our past experiences, we recognized that he wasn’t going to do well with regular cow’s milk formula at this young age. My supply was holding up so we decided to just hold off on supplementing with formula at this time.
But now, at 3mo. old we started to see a colic behavior creeping in- each evening seemed to get worse. We were very busy so we thought he was just picking up on the stress in the house of me returning to work, school starting, etc. My husband works 24hr. shifts, so our 9yr.old steps up to be the "man" of the house and help mommy out when he is on shift. He would tried so hard to help out, it broke my heart and made me so proud all in one breath. It took his words a month or two later, saying “Mommy, what happened to him?” for me to start to really realize I wasn’t the only one noticing that his fussiness was getting worse.
We were approaching 4mo,so we decided to trial some rice cereal to see if the thickener of it would help with what we speculated may be some refluxing issues. This seemed to work for awhile, but that would be the course of things to come for the next few months...we were slowly losing the grasp on what was really affecting him and what was really working. We turned back to the suspicion that my production was low, so we decided to trial another formula- this time trying soy. Soy brought on gassiness, stomach cramps, reflux, burping, and a chest congestion that sounded so badly after 5weeks, I feared he had croup or pneumonia. After almost 2mo of sporadic 2oz.supplemental soy bottles, we decided he must be building up sensitivity to soy. We stopped soy. He also was not accepting new foods well, and beginning to refuse many meals.
That instinct? Now burning flame in the pit of my stomach. Our little guy was experiencing pain day and night. It was getting more heart wrenching to see....stand by and not be able to do anything, or enough of anything to help him escape this now growing constant pain.
We knew something was still not right…months on an elemental diet we thought he was ready for re-introduction of foods. And where do you start reintroduction of food? Rice? This brought on days of vomiting and agitation. With this, we begin to make some connections in the literature: could it be FPIES? We went to the next food, something he enjoyed before we stopped food- sweet potatoes. This brought on many days of colic and runny stools and everything the same as rice, except the vomiting- all from just a few teaspoons of pureed sweet potatoes on one day. This was getting to be too much again. We had consulted with a RD (Registered Dietitian) and she brings up a possible connection with FPIES. Here I am coming across this FPIES again. We continued reading the literature and connecting the commonalities. Have we finally found something that could finally explain what has been ravaging our son's digestive tract?
From Diagnosis to 2yrs.:
Samuel is now 22mo.old and was diagnosed with FPIES at 11mo.at CHOP; although he had chronic illness for months prior to the diagnosis. Samuel is our 4th child, 2 of our other boys had milk protein intolerances so when Samuel started to show sensitivity to my breast milk, (gassy, "colicky", spit-up, loose stools, disturbed sleep) we assumed he had the same troubles with milk. A trial of formula confirmed this, with projectile vomiting and diarrhea and an increase of his intolerances. Reflux crept in, so we tried to add rice cereal to his diet, thinking this would control the reflux activity of a breast-fed only baby. He tolerated this for awhile and then started to refuse it, had increased spit up, fussiness, disturbed sleep, increased reflux. This was the course of things for the next few months- every effort we tried to control his symptoms, resulted in him getting progressively worse.
We consulted our pediatrician at 6mo.; with a referral to gastroenterology shortly after as he began to fall significantly on the growth chart despite a no-milk/no-soy/no-wheat elimination diet. He underwent his first scopes, which ruled out Celiac disease and EosinophilicEsophagitis, but found non-specific inflammation and lymph nodular hyperplasia. We took him off of breast milk and all foods and put him on a strict elemental formula-only diet (Elecare followed by Neocate). For Samuel, this is when things went from bad to worse.
Samuel stayed exclusively on the elemental diet for 2 mos. We were advised that his intestinal inflammation would be healed and could re-start him on foods. We started with rice....because no one is allergic to rice, right? We quickly got our answer after a tiny handful of rice puffs brought on days of vomiting. Even after recovering from the rice reaction, Samuel continued to be sick on a Neocate only diet. He would vomit so violently when we tried to give him Neocate Nutra- the retching- stomach-emptying-vomiting that came with this elemental based-medical "food" was un-nerving.
We knew something was horribly wrong...but specialists couldn't help because no one had heard of this thing called FPIES. I researched day and night, read every journal article I could find, brought everything to our pediatrician...and then decided we needed to see a specialist familiar with this rare illness, if we had any hope of a direction. We went to CHOP, we traveled from Minnesota to Pennsylvania in an RV loaned from friends (bless their hearts) with our 4 children and got confirmation of the diagnosis of FPIES. We returned, hopeful we could finally have a path to wellness for our little man; only to quickly find that even with a diagnosis- too little is known on how to treat this rare disease.
With Samuel getting increasingly sick from his formula, and a growing suspicion of corn allergy; we trialed corn. It is difficult to put into words how scary this time was for us as we watched his little body try to re-coop from such a violent reaction to such a small amount of food. We had no help, his doctors did not understood what was happening to him, or believe that it was indeed from the very things that were supposed to be nourishing him. He suffered from vomiting, diarrhea, lethargy, dehydration, high fevers, a febrile seizure...and still, the mechanisms of his disease were not understood by his doctors. Our Allergist at CHOP had advised he would continue to decline if we did not remove his triggers- in every form including the corn syrup of his formula, and medications. The mucous/bloody diapers, the continued vomiting, the refusal to eat, the spiraling from the inflammation in his intestines....would not stop until we removed his triggers from his diet.
We were scared, we held him all day, even in his sleep as we were afraid for him to sleep alone for fear we would lose him in his sleep. We needed to put him on another source of nourishment for his body to heal; unfortunately all formulas have either dairy or corn in them, this is when we started him on Hemp milk - he drank 50oz.the first day! His body perked up and he came out of the very scary stages he had been in for all those days....we knew then that we would need to move away from the elemental formula and build him one out of Hemp milk. He now thrives on Hemp milk formula but continues to not tolerate food introductions. His FPIES is chronic, and has become complex- it is "atypical"; his body cannot properly shut down its attacking mechanisms once it begins to perceive a food as a toxin. I continue to research daily into his mechanisms and complexities. More medical research is needed into this rare disease so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor's offices, and treatment protocols are uniformly established and begun immediately. So that support is found in specialist offices. So that everybody suffers a little less and eats a little more.