The FPIES Foundation Toolbox
The place where you will find the basic "tools" you need to get started on your journey with this diagnosis.
Perhaps you’ve found your way to this website because a loved one was recently diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES); or you suspect your little one might have FPIES. When you first heard about the diagnosis, you may have felt overwhelmed, and you likely had many questions. A new diagnosis can be very confusing, and with an allergy as rare, and often misunderstood, as FPIES, it can be difficult to know where to begin educating yourself and your family.
Here, you will find resources for navigating day-to-day life with FPIES, as well as resources for navigating medical procedures, doctor’s visits and even emergency department care. Inspiration and comfort can be found in reading stories shared by families in our community.
Regardless of where your family is on this journey, these tools can be essential in helping to build a foundation of support for your little one diagnosed with FPIES as well as for your entire family.
Could this be FPIES?
Learn when the signs and symptoms may indicate the need for an FPIES evaluation.
Find guidance in navigating medical appointments and learn how to get the most out of your child’s important doctor visits.
Nutrition resources for families, plus tips, tutorials and techniques for cooking and beyond at the kitchen table.
Tools for Kids
Because every kid is unique, kids need their own special place at the Foundation, too! Resources tailored to infants, children and teens can be found here!
Are you a medical provider hoping to learn more?
Please visit our Health Care Professionals page for provider-specific resources!
Just getting started? Check out these helpful topics from the Foundation Q&A pages:
I suspect FPIES, but what do I do if my child's doctor is not familiar with FPIES?
Because FPIES is an uncommon diagnosis, it is possible that your child's doctor may not be familiar with it. That's okay, and it is not an indication that you need a new physician. The vast majority of physicians are committed to ongoing medical education, and will welcome a discussion of a possible diagnosis, if you follow a few common sense guidelines. . .
How do I find a knowledgeable doctor to assess my child for an FPIES diagnosis?
A Board-Certified Specialist (Allergist/ Immunologist or Pediatric Gastroenterologist) is an important member of the healthcare team caring for your child with FPIES. These fellowship-trained physicians have received special education in allergic disorders of the gastrointestinal system. A University-based medical center (especially one with a fellowship program in either Allergy/ Immunology or Pediatric Gastroenterology) will have physicians who are knowledgeable about FPIES. However, many community-based physicians are also well-versed in the diagnosis. . .
My child was just diagnosed with FPIES-- now what?
First things first. Take a deep breath, hug your little one, and: 1) Get ready to go to school! As with any chronic medical condition, the more you learn. . . 2) Prepare to partner with your physicians! 3) Get support! 4) Get your family on board! . . .
Page published: June 3, 2012. Last Update: January 9, 2018. Copyright 2012, The FPIES Foundation.