07/27/2025
FPIES is rare. But it shouldn’t be unknown.
(Long read, but if you’re a parent navigating this, it’s worth it.)
Last week, I found myself in a familiar place: the emergency room with my son, calmly but urgently explaining that we suspected an FPIES reaction. This time, it was likely triggered by playdough. Wheat is a known FPIES trigger for him, but it had been over a year since any exposure. We had hoped he had outgrown it. Sadly, that doesn’t seem to be the case.
As I shared his usual reaction pattern, timelines, and the treatments he’s historically responded well to, the triage nurse looked at me and said,
“Wow. You’re so knowledgeable. That’s really helping me right now.”
I let her know that their system still doesn’t allow FPIES to be entered properly. Chickpeas, another one of his triggers, can’t even be selected under legumes or allergies. Every time we come, I have to say it out loud and explain it from the beginning.
I also mentioned that his temperature had started to drop as the vomiting intensified, and that he usually becomes lethargic at this stage. These were signs we were already in the acute phase.
FPIES reactions often begin with vomiting, but they can quickly progress. Some children go on to develop dehydration, low blood pressure, hypothermia, and in rare cases, shock. These symptoms can be easy to miss if a child doesn’t “look sick,” which is why clear, timely support is so important.
We were brought to the back fairly quickly and seen by the chief ER physician. I said, “My son has FPIES,” and he responded without hesitation,
“I know what that is.”
And I could finally breathe.
I didn’t have to give the usual crash course. I had our printed ER letters ready, but I didn’t even need to hand them over. He received IV fluids and Zofran right away. We were able to avoid steroid treatment this time. The vomiting stopped, and within the hour he was back to his usual, energetic self. After monitoring him for another 30 minutes, the physician felt confident sending us home, knowing I could manage things if anything changed. Before we left, he even joked about offering me a job in the department, which made me laugh but also feel seen in my role as a nurse.
But it hasn’t always been like this.
Eight years ago, I sat in a different ER with my daughter and was treated very differently. I was dismissed. Told I was overreacting. Heard things like, “I’ve never heard of that,” and “you don’t want to put a needle in such a small child,” as I tried to explain how important IV access is in these situations. I later wrote to the patient advocate. I received an apology. Staff were trained. But that experience stayed with me.
Since then, I haven’t stopped advocating.
I was later interviewed in our local paper, alongside another FPIES mom who’s now a close friend, about the lack of appropriate emergency care for families like ours. Since then, I’ve continued to build community and educate wherever I can.
Now, through Mindfully Nursed, I teach families how to prepare for moments like these. What to say. What to bring. What to watch for. And how to advocate when things get scary.
Because kids like mine deserve better.
And parents shouldn’t have to become medical experts just to be taken seriously.
But when they do, I want them to feel prepared and less alone.
If you’re navigating an FPIES diagnosis, or wondering if that might be what’s going on, I see you.
You’re not alone.
💻 www.mindfullynursed.com
📍 Support for Ontario families
🔗 Link in bio
