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?