Food Protein Induced Enterocolitis Syndrome. Micah has had that diagnosis for over a year now, and it only took us 2.5 months to actually get that diagnosis. Some parents wait years for a specialist who is familiar enough with FPIES to get diagnosed. They are told to feed their child food after food… watching their babies react and vomit and scream in pain because no one knows any better. It’s heart wrenching. Although our pediatrician doesn’t know a lot on FPIES protocol, she knew the basics of what it is… she got us the diagnosis and our foot in the door. She still tried to push food trials on us (unsuccessfully) too early, and she doesn’t know enough to diagnose other syndromes that typically go hand in hand with FPIES (I’m educating her on that), but she’s changed her mannerisms towards me. She listens to me more than she originally did, and she’s willing to learn. Both are traits I’m thankful for.
Since FPIES is such a new diagnosis in the medical world, when you find someone who knows anything about it, you kind of want to hold that doctor/pediatrician/dietician/gastroenterologist/etc and never let go. But finding one who actually knows how to treat it or go about food trials and in office oral food challenges? It’s not easy. We were told Micah had many things before being diagnosed… and boy, were they wrong. I see these false truths come up so often in my FPIES community… so it’s no surprise many people wait months or years to be officially diagnosed! In no particular order, here are a few of the truths and lies of FPIES that we’ve heard!
LIE: It’s just a stomach bug.
TRUTH: It wasn’t.
LIE: It is pyloric stenosis. We need to give him an x-ray to confirm.
TRUTH: It wasn’t. Pyloric stenosis happens to newborns… which is what I told the resident doctor before the x-ray. It is projectile vomiting almost immediately after eating and generally without bile. However, Micah was 6.5 months old. His vomiting happened 2 hours later… and among other reactions, he vomited to the point of bile. Also, his x-ray came back fine.
LIE: FPIES isn’t a “thing.” You should stop Googling everything. Just feed him something else.
TRUTH: It IS a thing. And while Google can lead you down a dangerous rabbit hole, it helped me find the diagnosis. Doctors don’t know everything. They are human too. But follow your gut. Ask for referrals elsewhere. Ask for specialists. Get second and third and fourth opinions.
LIE: Babies can’t react to food through your breast milk.
TRUTH: They can. I’ve had to eliminate dozens and dozens of foods from my diet so I can safely nurse Micah. It’s not easy. At all. For me? Forget eating out at restaurants, going to potlucks, or stopping at a drive thru for a quick bite to eat. Date nights at the movies? Sure… but no popcorn or snacks or drinks. No frozen yogurt or eating at that fancy new steakhouse. No coffee dates or travelling out of town (unless you want to pack all of your safe food in a cooler). Some moms end up on a 4 food elimination diet… literally eating only 4 food items so their babies won’t react. Something like grass-fed lamb, kale, blackberries, and coconut oil. That’s it. Some moms need to stop breastfeeding completely because their 4 food elimination diet is still giving a reaction. Some moms need to have an NG or G tube for their baby. Whatever works for your baby, that’s what you need to do. You didn’t fail. No one wants their baby fed through a tube, but if it’s working for you, keep it up! You can do it!
And now for a few more truths:
TRUTH: FPIES is a non-IgE mediated food allergy affecting the gastrointestinal tract. This means no hives or anaphylaxis. Typical reactions include vomiting 2 or so hours after ingesting a food, diarrhea, mucus or blood in stool, and dehydration. These reactions can lead to severe lethargy, change in body temperature, low blood pressure, reflux, pale or grey skin, and having organs shut down as the body goes into shock.
TRUTH: Many children start to outgrow FPIES around 3 years old, however, it’s not the case for everyone. Your 18 month old may have outgrown their only trigger, or your 18 year old may still have to avoid 3 or more foods. There’s no guessing where you’ll land. You just hope for the best, and you prepare for the worst… but never lose hope.
TRUTH: Just because one child cannot have dairy, soy, and oats doesn’t mean the next child can’t either. Some kids only have to avoid 1 food. Some kids literally react to everything. Every case is different… making food trials so difficult!
TRUTH: There is no allergy testing for FPIES. It’s all trial and error… you feed your baby a food, and then pray they won’t react. It is the most anxiety filled time I’ve ever had to experience.
TRUTH: Finding my FPIES community completely saved my sanity. They got me through some of the hardest times as a parent. They know what you’re going through. Like, they really know. They pray for you. They offer you formula when you need it. They will look at a picture of your son’s poopy diaper and tell you if it looks normal… because you forget what a normal poop looks like after seeing so much blood and mucus in there. They’re some of the strongest people you’ve never even got to meet, but you feel closer to them than a local friend. It’s an unfortunate situation to be in, but if you’re going to go through it, you want them on your side. And they’ll cheer you on saying things like “That is a perfect looking poop! Way to go, momma!”
And TRUTH: After explaining FPIES so many times, you disconnect from how severe the reaction was. Like “Yeah, he was vomiting until almost shock. He was pale and lethargic and passing out.” The look on other people’s faces is terrifying. And to be honest, it was completely and utterly terrifying… but you disconnect. To save your sanity. To help you heal. To get through it. And you will get through it. You’re stronger than you think you are… you just may not see it until you’re on the other side of it all. And I promise, it’s worth it. The crying, the fears, the sleepless nights, the stress, the endless appointments and bloodwork and meetings, the food trials, etc. It’s all so worth it. When you watch your child eat something “normal,” and he has no idea the joy that fills your heart when you see him eating a blueberry or a carrot. It’s worth it. One day at a time. You will get through it.