05/04/2026
Today is National FPIES Day.
We’ve lived this for almost 10 years.
If you know, you know.
This isn’t the kind of allergy most people picture. No hives. No swelling. Sometimes nothing obvious at all… until there is. And when it hits, it can be fast and frightening.
A child who was fine not long ago suddenly isn’t. Pale. Lethargic. Repeated, forceful vomiting that doesn’t stop. You’re watching it unfold and something in you knows this isn’t a stomach bug. You end up in the ER trying to explain something that doesn’t fit the usual boxes. Sometimes you’re met with understanding. Sometimes you’re met with “huh?” when you say FPIES.
And if it’s not recognized for what it is, families get sent back out to try again.
So they do. Because they’re told to. And sometimes they learn the hard way.
But not every story looks like that.
Sometimes it starts earlier, quieter.
A baby not gaining enough. Feeding doesn’t feel right but you’re told dairy and soy are usually the issue in breastmilk, so just cut those. Or switch to formula like it’s that simple, when many of these babies can’t tolerate even hypoallergenic formulas… or refuse them outright. You’re left trying to feed a baby who isn’t thriving, while being told you’re doing what you’re supposed to be doing.
You start to feel like you’re missing something. Or worse, that you are the problem.
Then come the acute reactions. The ER visits. Trying to advocate while your child is unwell. Hearing things like “you don’t want to put an IV in that little babe,” when everything in you is saying yes, we need to act now. Having to argue over medication ingredients because excipients matter for these kids, even when it sounds like you’re being difficult. Being met with “so you just want to refuse treatment?” when all you’re trying to do is make sure the treatment itself won’t cause harm.
It wears on you.
And then there’s the part that doesn’t get talked about enough.
The ongoing piece.
The food trials.
This doesn’t just go away.
Every time you introduce something new, or retry a food you’ve been avoiding, you are watching and waiting. You try to act normal. You try not to let it take over. But you’re counting time in the back of your mind, scanning for signs, bracing for what might come.
Every single time.
And then the day comes when you are told to retrial a known trigger. You sit there, fully aware that this could make your child very sick, and you do it anyway because you need to know.
There’s something about that moment that’s hard to explain unless you’ve been there.
It’s a lot to carry.
I come to this as a nurse and as a parent who has lived it. Those two things don’t cancel each other out. If anything, they make the gaps more visible. The clinical pieces matter, but so does what happens in the spaces where families aren’t believed right away. Where they have to push. Where they hold the line for their child even when it’s uncomfortable.
If you’re in that place right now, trying to make sense of what you’re seeing, I see you. If you’ve felt dismissed along the way, that matters. And if this is new information for you today, FPIES is one of those conditions where earlier recognition really does change things.
This isn’t just about awareness for the sake of a post.
It’s about fewer families sitting in that limbo. Fewer kids going through repeat reactions before someone connects the dots. And more support that actually meets people where they are.
If this resonates, you’re welcome to share it. You never know who is still trying to put a name to what they’re seeing.
I also offer nurse consultations for families navigating feeding challenges and FPIES. You don’t have to figure it out alone.