Navigating Travel with FPIES

Today, May 4th, is National FPIES Awareness Day! Food protein-induced enterocolitis syndrome (FPIES) is a non-IgE mediated form of food allergy. Learn more about National FPIES Awareness Day from our partners at the International FPIES Association (I-FPIES).

In honor of National FPIES Awareness Day, Fallon Schultz, the founder, and president of the International FPIES Association has shared a guest blog post with travel resources for patients and families living with FPIES.

What is FPIES?

FPIES is a severe, non-IgE reaction that occurs in the gastrointestinal system. Unlike most food allergies that produce immediate reactions such as swelling and hives, FPIES reactions are characterized by delayed, profuse vomiting, lethargy, diarrhea, and even shock. The most common triggers in the United States are cow’s milk, soy, and rice, but any food can cause an FPIES reaction.

More and more, non-IgE allergies like FPIES are being included in the broader dialogue on food allergy. Over the past decade, the “unknown” food allergy has quickly become known with the International FPIES Association’s continued expansion of educational resources, research studies, global outreach, and awareness.

Traveling with FPIES

Fallon Schultz and her son Landon

Many FPIES patients and families have shared challenges that are typical for the food allergy community. Today, I’ve chosen to focus on the topic of travel, as some families are starting to plan for travel again, and FPIES families have special considerations when preparing for a trip.

Traveling with a child who has FPIES can be daunting. As a caregiver, you may have many questions when planning for a trip. How do I prepare my child’s safe foods for travel? What questions should I ask the airline, hotel, and restaurants when planning? How do I prepare for an emergency when traveling?

I’ve compiled some of the International FPIES Association’s go-to travel resources to help navigate your next journey. While these resources are geared towards traveling with FPIES, they may also be helpful to anyone traveling with food allergies or restricted diets.

Resources at FPIES.org

The International FPIES Association’s website also features numerous resources to help with your travel planning.

• Traveling with FPIES: What You Need to Know: This page includes links to the I-FPIES emergency letter, a sample letter of medical necessity (for those traveling with nutritional supplements such as elemental formula), as well as tips on airline travel and lodging.
• Planning ahead is key! View our list of travel planning tips and useful links, additional travel resources, and our FPIES travel checklist, which includes a timeline of what to do and when.</li

Resources at FPIES University

FPIES University, a FREE multi-functional electronic platform created by I-FPIES, includes a collection of videos on traveling with FPIES. To access the content described below, caregivers can join here. FPIES University also has a separate platform for healthcare providers that features additional travel resources.

• Travel with FPIES is presented by Carina Venter, PhD, RD, Associate Professor of Pediatrics, Section of Allergy and Immunology at the Children’s Hospital Colorado. In this video, Dr. Venter talks about making travel by car and plane more FPIES-friendly, as well as lodging considerations, and eating out while traveling.
• Traveling with FPIES is presented by Michelle Maciag, MD, a Clinical Fellow at Boston Children’s Hospital. In this video, Dr. Maciag talks about planning ahead for a trip, including airline, hotel, and restaurant considerations; preparing for an emergency; and recommended resources.
• Travel Hacks from an FPIES Mom is a past Facebook Live session that I did on Mother’s Day. It features some of my best, most practical tips for preparing and transporting safe foods.

If travel is in your future, these resources and tips can help make your trip both fun and safe. With the proper planning, you can take the stress out of traveling and focus more on creating wonderful memories!

Please note that these resources were developed prior to the COVID-19 pandemic and may not reflect some of the current travel and safety guidelines and protocols related to the pandemic. Cambrooke recommends following CDC travel recommendations regarding when to travel and safety measures to take during travel since traveling can increase the risk of getting or spreading COVID-19.

Cambrooke would like to thank Fallon Schultz, Amity Westcott-Chavez, and the International FPIES Association (I-FPIES) for sharing this valuable and practical information and for their continued support of the FPIES community.

How Cambrooke’s Formulas Can Help

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