Hey there, I’m Amber – mom to two amazing kids who just happen to have FPIES. I’m the voice behind the words over here at FPIES Roadmap. I’ve created this space because at one time, I was where you might be – scared and overwhelmed and not sure what to do next. I had a baby who was very sick and I wasn’t sure what to do. We spent four months with a screaming baby with blood in her diapers. I was nursing at the time, and we were told to start eliminating food from my diet. I spent all of my free time searching for answers.
We pushed through tests, procedures, and specialist visits until we were finally sent to a local allergist. After some skin prick testing that was negative for everything we knew was making my daughter sick, the doctor came back in and told us all that was left was FPIES. We were handed the FPIES diagnosis and a tiny stack of medical research papers (there were only a handful of research studies available at the time) and the allergist basically said good luck, have a nice day.
I came home and scoured the internet for help, and all I could find was the same medical articles I was given by the doctor, and a Facebook group with about 1,500 moms in it. That group saved us. Over the next few years I learned from the most amazing group of warrior moms who fought for and saved every tiny scrap of information they could and then shared it with the group. Soon, I was able to use our experiences (by this time I had two babies with severe FPIES) to help other moms just starting out on this hard road.
That was four years ago. Now, I have older children who still haven’t outgrown their FPIES, although we are much closer than we were back then, and we certainly know a bit more of what to expect.
In my free time you will find me in the FPIES Facebook group, and I am still fighting the FPIES battle with my own kids. Even now, 4 years later – there still isn’t much info online about FPIES other than professional medical articles. I’m here to give a real look at what life looks like with non-IgE food allergies, and to hopefully share some tips and encouragement to help you through the dark spots.
I don’t have all of the answers – I have no medical training other than personal experience with what we’ve walked through. I don’t have a magic solution or a pill to cure your baby. But I am here to try to give some answers to questions that I see asked over and over by moms and dads with newly diagnosed kids.
FPIES is hard. But you are not alone.