Well, hello there! My name is Sarah, and I am the mother of 3 adorable little guys, Sam (7.5), Eli (3.5) and Micah (7mo). We are a household of known food allergies, including gluten, dairy, soy, and eggs. But nothing prepared me for what I was about to go through after Micah’s birth. You see, the littlest guy here, was born on a rainy morning in mid-December 2015. I had been in prodromal labor for about a week at that point. In and out of the hospital thinking things were moving along, it was finally on that grey Wednesday morning, as I was getting Sam ready to go to school, waiting at the bus stop, that the contractions progressed to every 3mins and I couldn’t talk through them, so off Sam went to school and we made plans for my parents to pick him up in the afternoon, and take care of Eli while we were gone to get this little guy out into this world. Got to the hospital around 9:30am, set up on contraction monitor for about an hour before getting admitted and then everything else is sort of a blur. All I remember is major pain all over my back and hip (bath did not help, epi did not help)… but after enduring hours of horrible pain, my 7lb 9.5oz little guy, came out into the world at 3:07pm. Finally! He was here! And he did great that first day while in the hospital. He fed well, he slept well, things were so good, I was allowed an early discharge after only 24hrs. I was in heaven, the older 2 boys were in love with their baby brother and everything was great…. or so we thought. Fast forward about 2wks and everything started going downhill. He hadn’t gained back his birth weight yet (well, almost), and he was starting to get very cranky, refluxy (I was used to it by then though after Eli went through horrid reflux for 6mo), and crying in pain for hours at a time every night. We were told he had colic and it would get better as time went on. I slept with him on my chest every time he needed to sleep, I held him upwards during his awake times, I rocked him during cranky moments, I tried calming baths, nothing helped. By 2months old, he hadn’t gained much, but was told he was growing on a smaller curve and he was fine. But I knew something was wrong. Mama knows! Anyway, his reflux had gotten so bad too, that he was arching his back with every swallow, and slept with his body contorted sideways, head looking upwards. He was so uncomfortable, that they finally decided to put him on Zantac. We started giving it to him that night, and oh my, what a difference it made. He slept!! We had done it… or so we thought… again. After a few weeks, he just didn’t get any better even when we upped the dose. Actually, it made things worse. I started thinking about what was in there and it was principally made of alcohol and peppermint (EWW!). At his 4mo check up, he hadn’t gained anything for weeks and doctor decided it was time to supplement his breastmilk with some formula. Only thing he would be remotely okay with was Neocate. So we started that in hopes of helping him grow. After 2 wks he had gained a full pound! Yay! But then the 3rd week started and he was worse than ever. Bloody diarrhea diapers 8 times a day, and spitting up more than his usual. Something was up with this Neocate. Looking into ingredients and forums online, I realized it could only be 1 thing causing him issues now. CORN! We got rid of Neocate and within 2 days he was back to normal. And then looking even further into this corn intolerance/allergy, I found out his Zantac was full of corn too. Stopped that too and he was like a whole new baby. No spit ups, no bloody diapers, nothing. He was okay. So I checked on cornallergens.com and removed EVERYTHING corn-y from my diet. He started getting better and better. With only one exception. He wasn’t gaining. Actually at this point (around 5mo old), he was starting to lose weight. He went from 13.3lbs to 12.9lbs in a month…. We were instructed to start feeding him solids asap at his 5mo check up. We needed to fatten him up. I started with rice cereal, and bloody diapers happened again. Hmm… Next was broccoli. He wouldn’t have none of it. So I gave up. Tried bananas next. And omg, my child was vomiting for HOURS during that night, until he was dry heaving and passed out in my arms. I did not know at the time what this was (shock), but it happened again and again after trying a chicken, apples and sweet potatoes mix. Something was up. I did some online research and every time, FPIES would pop up in my google searches. I had already heard of this from 2 friends who had FPIES kids a few yrs ago, so hey, I looked at it. And BAM! It clicked. My child had FPIES (Pronounced F-pies). I joined an FPIES facebook support group and started our looong journey into the world of this severe food allergy…. wait a min, what is FPIES anyway? Well, it stands for Food Protein Induced Enterocolitis Syndrome. Unlike, an IgE allergy that gives you rashes, hives, anaphylaxis and itchyness, this type of allergy is in the gut. It happens between 2-10hrs AFTER ingestion (instead of straight away), and it causes profuse vomiting, diarrhea, reflux and other symptoms. It can even lead to shock, which requires an ER trip asap, with IV fluids and Zofran… and possibly lead to a long hospital stay. The bad thing about FPIES? It is not something that can be tested for? So, how do you find out what your child reacts to? By food trials. And just hoping, hoping for a pass. And praying that you don’t see your child suffer through such horrible symptoms ever again.
With Micah, this means that whatever I want to feed him, instead of going at it like I wanted to before starting solids (I did BLW with Eli and LOVED it, wanted to do it again), I have to schedule his food trials around the times that will make sure I am around in case of a reaction, and it takes up to 2wks to see a 100% food pass. For now, he has NOTHING he can eat, other than breastmilk. He has failed so many foods, it will be a miracle if we see him with ONE safe by his first birthday. And this makes me very sad. My boy won’t get to enjoy food. My boy won’t get to go to playdates or parties, and partake in the great foods like his little cousins and friends will. We will have to watch him like a hawk and make sure not even the tiniest little crumb comes anywhere near his mouth and hands.
We are now waiting on a GI appointment, so s/he can help us decide on a plan of action for my little guy. For now, we have removed all his triggers from my diet, and are trying to give him even more calories by me pumping after each feed and making sure he gets all the good stuff. He has no formula he can take. They all contain corn, except Alimentum Ready-To-Feed, but he can’t take that one either as he reacts to the dairy in it. He is 7mo old now and weighs a whoppin’ 12lbs5oz (has lost a full pound in 7wks). We see the pediatrician again on Thursday for his “late” 6mo appointment. We shall discuss things with her and hope for a referral. But in the meantime, I am waiting a bit to trial more foods as his gut is too inflamed and needs a rest.
I will be posting our updates, FPIES info, and safe recipes/foods as we go along this journey. Ohh I almost forgot to mention this good part. Guess what? Most FPIES kids will outgrow it by age 3-4. Yay!! That gives me some kind of hope for the future 🙂