Caregiver Anxiety and FPIES

A guest post written and submitted by Mun Cho, Registered Dietitian and Food Allergy Parent.

FPIES (Food Protein-Induced Enterocolitis Syndrome) is a non-IgE food allergy, which is different from the IgE-mediated food allergy that could potentially be anaphylactic. Acute FPIES involves excessive vomiting, which could lead to severe dehydration and shock – this is a medical emergency requiring IV hydration. Chronic FPIES may include diarrhea and poor weight gain. FPIES affects babies more often than adults. Examples of common FPIES triggers are rice, oat, milk, soy, sweet potato, and peas. But ANY food can trigger an FPIES reaction (even quinoa and blueberries). While charts of high-risk and low-risk foods are useful in predicting how likely a food will be a trigger in a group of babies, it is not designed to predict the risk of a reaction in an individual baby. Meaning you won’t know if a baby will react to a food until you feed it to the baby. Caregivers need to be prepared to respond in case a severe reaction happens, requiring medical attention.  

While most babies may react to a single food, some may react to 3 or more foods. Did I mention that ANY food can be a trigger and there is no way to predict if a reaction will happen until you feed it to the baby? Each new food introduction comes with a new wave of anticipatory anxiety. And a baby has to learn to eat MANY different foods. One can argue that introducing new foods to a baby with FPIES is just as stressful (or perhaps more stressful) than an oral food challenge (OFC) at an allergist’s office. As a parent of a child with an IgE-mediated peanut allergy, going through an oral food challenge was nerve-wracking. But I was comforted by the fact that we were medically monitored by the allergist. Since food introduction for FPIES babies are mostly done at home, we are left to our own devices……hoping that nothing happens.  The psychological toll on FPIES caregivers is significant and it is not discussed enough. So if you work with FPIES caregivers, check in on them to see how they are coping and ask how you can support them. Families dealing with FPIES may benefit from working with a team of healthcare professionals including dietitians, occupational therapists, counselors, allergists, and pediatricians. Please check out the FPIES Provider Directory for more information.

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This post was written by Mun Cho, RD. Read more and connect with Mun Cho, Registered Dietitian and food allergy parent, here:

Caregiver Anxiety and FPIES video

Thank you to Angelika Sharma for the voice-over and creation of this video.