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FPIES: What you should know in order to stay sane

This is our personal approach to navigating Food Protein Induced Enterocolitis - some information shared here is from our Pediatrician or Allergist, but most is personal experience.

Welcome to our FPIES roadmap - buckle up, it's a tad bumpy!

Hudson - just being his little adorable self

Living with an FPIES kiddo:

Yikes, by now you may too, have received a diagnosis for your little one OR you are starting your own research (like most FPIES parents do) in order to determine what is happening to your sweet little one. I remember when we were finally diagnosed I thought to myself, "Hudson won't be able to lick the spoon when we're cooking, oh my god I need to go home and sweep, and HOLY shit what am I going to feed my kid, breast milk forever??"

FPIES can absolutely be one of the most challenging things you and your family are experiencing right now, and heck it's still incredibly challenging for us each and every day. My hope is that this list will give you some initial information to help you in your families journey, like these items helped us!

Tip #1 - Make sure your Pediatrician is 100% onboard

What I mean is, make sure they know how serious this is and how much is affects your life EVERY day. A lot of the Medical world is still in the dark about FPIES - they may think of it as "intolerances" or "stomach aches" (real phrases from our doctor). It wasn't until I said our son was blue/grey, completely limp like a noodle in my husbands arms, in the ER three times, vomiting like the exorcist, did he finally grasp what we are working through. It may have also been the RBF look I was giving him, too.

I choose to mention our FPIES experiences every visit we have, no matter why we are there. "We are trialing Zucchini right now, day 3" OR "Hudson ate a piece of dogfood yesterday and I just about had a heart attack before shoving my finger down his throat."

Tip #2 - Seek out a qualified and empathetic Allergist or GI Specialist

Now this has been different in the FPIES community, some families have had luck with Allergist, while others swear by their GI specialist. Truthfully, after working with our Allergist just after one visit, we realized she gave us as much information as she could, provided some really useful tools, and we knew at that point we would be monitoring most everything on our end. We never felt the need to see a GI in addition, however we DID see a dietician which was SO helpful to ensure Hudson was getting what he needed outside of Breast Milk.

"This will be the hardest season of life with your little one, and most people will have no clue how to support you." – Our Allergy said this in our first visit which woke us up to the reality of what we were learning.

Our Allergist provided this FPIES food chart which helped us tremendously!

Hudson enjoying one of his safes, carrots!

Tip #3 - Communicate and Advocate for your little

Speak up often and always, to your Doctors, friends, family, caregivers, neighbors! We share information as often as we can with those around us. Make sure people know how serious this is, and what your little one will experience if they are exposed to any of their trigger foods, or unknowns! We ended up buying some of these pins and bracelets (you can customize) for Hudson to wear when we knew we would be at events that food was involved.

Along with communicating, do your own research. One interesting area we are just diving into (almost a year into our journey) insurance can cover some of your monthly cost of medical food to supplement your little ones diet!

Tip #4 - The FPIES Foundation and support groups

This website saved us in the early months, they are so much useful information regarding different reactions, symptom checker, ER letter (have your allergist or GI write this for you), how to raise awareness, etc!

The other group we joined was an FPIES Facebook group that shares personal experiences, honestly they have been more helpful than any of our other doctors. I will say however, if you have anxiety - don't go down a rabbit hole and think your little one will have the same experience as every other kid in that group!

The FPIES Foundation Page

Tip #5 - Tools/Food we've used along the way with few "safes"

Lastly, what helped us were a few of these items below but ALSO a new mindset. This sucks, BUT we are dealing with it for the sake of our little FPIESWARRIOR baby! Also, telling ourselves that he will (most likely) outgrow this later in life.

  • The Fpies handbook gives you SO much information regarding food trials, how to get insurance involved, communicating with doctors, etc.

  • We found the pouch filler amazing for homemade safe food and traveling

  • The last three items, pumpkin/apple puffs, strawberries and apples are so handy right now since we don't have any other store bought items (other than pouches like these) that we can eat!

AND to close us out...

Just remember, your little ones will get through this, mom and dad with get through this, and years down the road you won't have to worry about all the minuet details of food. Love on your babies! Happy to answer any other questions you all have - send me a message or leave a comment!

Hudson thinking rocks are food ;)

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