Travel with FPIES

Traveling with FPIES may be challenging, but there are some helpful steps you can take to ensure a safe and enjoyable traveling experience. There are many resources available for patients and families living with food allergies, and with proper planning, your family can have a successful experience wherever your travels take you.

Planning ahead can help ensure the most positive outcome. It is important to carry your Emergency Letter with you at all times and locate your nearest emergency room prior to leaving. Informing your healthcare provider of your upcoming travels is also important. Your healthcare provider can provide you with medical travel documentation confirming your food allergy and medication list and help you develop an emergency action plan, should it be needed. If you are traveling with nutritional supplements such as elemental formula, a letter of medical necessity will be required to board an airplane. A sample letter for your provider to adapt can be found here.

Airline Travel
Prior to booking your trip, read up on the airline’s food allergy and special services policies. Most airlines post their food allergy policies on their websites. If they are not posted, you can contact the airline directly and request to speak with their special services department. Often times, if you alert the airline prior to travel, they will provide helpful accommodations, such as allowing extra baggage free of charge to carry medical and nutritional supplies. Some airlines will also offer priority seating to ensure your bags can remain close to your seat at all times and early boarding to ensure enough room for your additional bags.

Once you have established a contact with special services, keep your confirmed information with you at all times during your airport interactions and request that these accommodations be shared with the gate agent and flight attendants. If there is a breakdown in communication, staying calm and providing your medical documentation will help alleviate any additional travel stress. Be sure to allot extra time at the airport and arrive early for your flight.

During your trip, you will need to go through security. Having a medical necessity letter as well as special service accommodations can help make this experience easier and more efficient. If you are traveling with medical formulas, expect to have to remove these items from your luggage during security screenings and be sure to have your medical documentation readily available. Frequently, one or more of your formula cans/boxes will need to be opened for screening. This is to ensure the safety of all passengers on board.

Place all medications, clearly labeled, in gallon-sized plastic bags and check with your airline about their policy for fluid ounces. It is often helpful to bring liquid medications in airline-approved sizes. Many convenience stores and pharmacies offer over-the-counter medications in travel sizes. Several airlines require that medications be in original packaging and some may require that they be unopened. Be sure to request this information from your airline prior to travel. Being cooperative and prepared will decrease time spent in this process.

Travel Tip: The U.S. Transportation Security Administration (TSA) currently allows over-the-counter liquid medications; however, volumes greater than 3.4 ounces need to be declared to a TSA officer. Such declarations can be made verbally, in writing, or by a person’s family member or caregiver. TSA may also permit gels or frozen liquids used to cool medically-related items. However, be aware that with airline security much is left to the discretion of the individual screener. For questions, contact the TSA at (866) 289-9673 or TSA-ContactCenter@dhs.gov.Be sure your carry-on items are TSA-approved in size, and keep in mind that all medical and dietary supplies will need to fit in a carry-on to join you on board. If you are checking bags, it is often helpful to label your bags. Some travelers prepare by placing painter’s tape on the outside of their luggage, labeling their name, destination and contact information should the baggage be lost. Anything you will need in case of emergency or delay should travel with you at all times, including foods that may be difficult to locate and nutritional supplements that require prescription. Dry ice is often allowed in travel coolers to keep refrigerated foods fresh, and some airlines will allow you to utilize their refrigeration for some items. Always check with your airline regarding the allowed amount of carry-on items prior to your trip. This will prevent your baggage from being refused at the gate.

Did You Know? If you are traveling internationally, be aware that produce is not permitted on your aircraft. You may travel with meat and pre-packaged goods only.

Once you have boarded, alert the flight attendant of your child’s food allergy. Do not consume foods that have not been personally prepared or deemed safe prior to your trip to avoid a reaction on board. Always read labels prior to consuming any food in flight, even those that have been previously consumed. You may bring cleaning wipes to disinfect your seating area if you have concerns about cross-contamination. Often times, with special accommodations, you may be allowed to board your aircraft prior to other passengers to examine and disinfect your seating area.

Most importantly, enjoy your travels. Taking your first trip can be a very empowering experience. With proper preparation and planning, FPIES patients and families can travel safely and with ease. Open communication, patience and preparedness are the keys to success. Keep in mind that there are no mandated laws of protection currently in place for those living with FPIES. In most cases, the airline will not make an announcement to the other passengers, and other passengers can eat food they have brought onto the aircraft.

If you are dissatisfied with the airline, you may send a written complaint to the Aviation Consumer Protection Division (ACPD).

Lodging
Finding lodging with FPIES can be a very individualized process. Researching a location that will meet your dietary, familial and individual needs is very important. Many FPIES patients will require access to a kitchen or kitchenette for food preparation as well as a facility that is in close proximity to a food chain that carries a child’s favorite FPIES-friendly foods and snacks.

Prior to booking your trip, spend some time brainstorming your needs and what would make your travels easier and manageable. Ask for suggestions from family, friends, travel agents and other FPIES families. I-FPIES can help link you to another family who has had a successful travel experience, or a family located in the area you wish to travel for additional support and recommendations.

After you have narrowed down your options, contact each location and request to speak with the housing or hotel manager. Inquire about their dietary policies and ask if they are able to accommodate your needs. Is there a kitchen available in your room? Is the kitchen stocked with pots, pans, etc.? If there is a restaurant on-site, can you work with the chef to develop a meal plan? Is there a medical facility nearby or a nurse or physician on location? Are you or your medical provider able to speak with on-staff medical personnel prior to your arrival? How have they handled emergencies in the past? These are all important questions to ask. Request the contact information for the manager you spoke with and ask if he or she can remain your main contact during the duration of your trip.

If you are traveling to an all-inclusive resort, speak with the Executive Chef prior to arrival and request a meeting upon your arrival. Below we offer some helpful tips for this meeting.

If you are traveling internationally, keep in mind that not all of your safe, pre-packaged goods will be available at your destination, and often times, the ingredients within these goods will differ. Also, be prepared and account for language barriers in your day-to-day and medical interactions.

It is often helpful to ask your provider where their patient’s have had great travel experiences. Your healthcare provider may have some insightful suggestions and can provide you with supportive guidance.

Always go with the location that you feel most comfortable and secure. In many cases, your lodging manager will help to create a safe travel experience and may even go above and beyond to make it a special one.

• Write out your packing list two weeks prior to travel and complete purchasing your supplies one week prior to your trip. Ask your healthcare provider and other FPIES families for tips and suggestions.
• Locate the nearest hospital or emergency care unit for each stop on your trip. Your healthcare provider may also help you locate an FPIES-friendly colleague in the case of emergency.
• One month prior to your travels, request a letter of medical documentation from your healthcare provider. Request that your provider maintain this letter in your child’s chart to utilize and update each trip.
• Seek out support. Are you traveling to a location you’ve never visited and are not sure of local food stores or hospitals? Reach out to I-FPIES to link in with a local family to ask questions. Also conduct online research to locate sources of food and medical care prior to your travels.
• Will you require refrigeration for safe foods? Purchasing a TSA-approved “travel cooler” is a great idea. If you are traveling with your child, have them decorate the cooler and label it with their name and medical supply sticker. Use the same cooler for all your traveling needs.
• Traveling internationally? Be sure to register with the SMART TRAVELER program to ensure safety and contact should an emergency occur, resulting in medical or dietary shortages.
• Worried about locating specialized foods? Order or purchase larger quantities prior to your trip; be sure to “over pack” these foods in case of an emergency or delayed departure.
• Be sure to pack safe foods for the duration of your flight, car or train ride. It is helpful to over estimate what will be needed in case there are delays. If you are traveling for longer than one week, account for the food’s shelf life to maintain freshness. If you are traveling with meat or fish, it is often helpful to freeze these items. If you have safe, non-perishable items, they may be easiest to bring.
• To avoid spoilage, cook your safe dishes and freeze them prior to your trip. Pack them in dry ice for your flight, car or train ride and place them in your freezer when you arrive to your destination. This will also cut down on prep time and allow more time for relaxation and fun!
• You can also prepare by shipping items ahead of time. Ask to speak to your concierge, hotel or house manager, etc. to request their shipping policies. In many cases, they will hold your package and confirm its arrival prior to your check-in date and time.
• It is often helpful to research lodging that provides a kitchen/kitchenette. Inquire about their table and silverware. Bring your own disinfectant soap so you may clean their supplies, or bring your own cooking equipment.
• Consider purchasing travel insurance and emergency care insurance, especially if you are traveling to a remote or international location. Medical care is not always accessible in areas outside of your mainland. Research companies like Angel Flights http://www.angelflight.com/, Air Care Alliance http://www.aircarealliance.org/or Flight Aware http://flightaware.com/live/special/compassion/, which provide volunteer airlift services in emergency situations. Keep in mind that this can often be avoided with proper planning and preparedness.
• Familiarize yourself with Angel Flight’s guidelines for patients and locate your public benefit flying organization: http://www.angelflight.com/patients/
• Ask to speak to the chef at your resort or travel location prior to traveling. Many times, the chef will be experienced in working with food allergic customers and can make accommodations to suit your needs. Several resorts have detailed food allergy policies in place, such as Disney. https://disneyworld.disney.go.com/guest-services/special-dietary-requests/.
• If available, complete a guest allergy/dietary request form to provide your hosting chef. Email or phone in this information prior to your travels so the resort may purchase specific brands or alternative foods you require. When arriving to your location, set up a meeting with your chef to review his or her purchases and develop a meal plan for the duration of your visit.

• Research a location for your travels (1-6 months prior to travel)
• Contact several lodging options and speak with hotel or housing manager with inquires (1 month prior)
• Select lodging (1 month prior)
• Contact airline and get familiar with its food allergy policies (1 month prior)
• Outline necessary accommodations for air travel (1 month prior)
• Speak with special services department of airline to request special accommodations (3-4 weeks prior with the exception of emergency travel needs)
• Document confirmation number and details needed to utilize special accommodations (after completion of special service call)
• Purchase or borrow travel cooler or extra carry-on (2 weeks prior)
• Complete a guest allergy/dietary restrictions form and provide to lodging chef (2 weeks prior)
• Request your healthcare provider complete our Sample Letter of Medical Necessity, update your emergency action plan and suggest a medical referral in case of emergency (2-4 weeks prior)
• Refill any necessary medications or nutritional supplies; request a higher quantity should your trip be delayed (2-3 weeks prior)
• Enroll for SMART Safe Traveler program if traveling internationally (2 weeks prior)
• Draft packing list (2 weeks prior)
• Compile and pack all medical and personal supplies (1-2 weeks prior)
• Review check list and double check bags (evening before)
• Keep medical documentation, identification, ER letter and needed supplies with you at all times
• RELAX, YOU GOT THIS! HAVE A GREAT TRIP!

Travel Assistance for Medical Care and Flight Sources

National Patient Air Transport HELPLINE: 1-800-296-1217

Angel Flights: 1-800-296-1217

Angel Flight America: 1-800-446-1231

Air LifeLine: 1-877-AIRLIFE

Air Care Alliance: 1-918-745-0384

Corporate Angel Network: 1-800-328-4226

Hope Air (CANADA): 1-877-346-4673

Mercy Medical Airlift: 1-800-296-1191

Miracle Flights for Kids: 1-702-261-0494

Continental Care Force: 1-281-261-6626 (Bob Jack)

Delta SkyWish: 1-877-327-8211

American Airlines Miles For Kids in Need: 1-817-963-8118

Southwest Airlines (Civic and Charitable Contributions Dept): 1-214-792-4103

Air Travel

View a list of TSA Permitted and Prohibited Items

Accommodations/Lodging

Ronald McDonald House Charity

Ronald McDonald Houses provide temporary housing for families traveling with children for pediatric medical care. RMH are near many major medical centers. For more information or to find a RMH, visit the Ronald McDonald House Charity website.

National Association of Hospital Hospitality Houses (NAHHH)

Office: 828-253-1188 Toll-Free: 1-800-542-9730

Bridgestreet Accommodations

This is a corporate housing company. All of the accommodations are fully furnished 1, 2 or 3 bedroom apartments and are not necessarily near a hospital. However, if ground transportation is available, for the long-term stay, they are excellent. Bridgestreet has some contracts with various hospitals around the country for discounts to traveling families. Please inquire as to whether they have availability at your required destination.

Phone: 1-800-278-7338