Planning Your Summer Adventures, When FPIES is Your Uninvited Travel Companion
Backpacks are starting to gather dust, you’ve inflated the kiddie pool . . . . summer must be here! At our house, we are always thrilled for the arrival of summer. It allows us to take a breath, stock up on fresh seasonal produce, and typically travel to see family in far-off states. My first daughter was born in Japan and by the time my second daughter was born, though finally living in the same country, we were still a (long) day trip away from family. We have racked up miles of experience traveling with FPIES for the past thirteen years, and today I am going to share some of the tips we’ve learned along the way!
1. Plan, plan, plan!
If you are traveling by air, we have a great worksheet in our learning library that can help (https://fpiesfoundation.org/wp-content/uploads/2015/10/Traveling-with-FPIES-Checklist.pdf) It helps you to take inventory of various considerations, such as navigating conversations with the airline, FPIES-specific checklists, questions to aid in planning, and links out to more resources.
If you are traveling by car, planning is still essential. For us, knowing how much space our luggage is going to take up is key, as we travel with all of our girls’ safe foods and even their cookware.
Some things I have done to reduce the amount of luggage we have to bring with us are: shipping safe foods to our destination in advance (when it is a family member’s house), finding specialty grocery stores near to our destination and calling them in advance to be sure they carry the safe foods we need, and to create baking mixes of my own, so I don’t have to bring all of the baking ingredients with me separately. Creating packing lists can also help you to be sure you don’t leave any essentials behind.
Sometimes, families may travel as part of a plan to see a specialist for medical reasons. Whereas all of these tips apply for medical travel as well, be sure to do some additional planning regarding documents you may need to bring, tests you may need to prepare for, and activity kits to keep your little ones occupied. The practitioner you are traveling to visit may have some insights into this process, so be sure to reach out to them well in advance of your appointment(s).
2. Medical Checklist
In addition to making sure that you have enough safe foods for your time spent traveling as well as for your time spent at your destination, it is essential to have a basic knowledge of the medical resources available at your destination. Hopefully an FPIES reaction will not occur when out of town, but you do need to have a plan in place in case one does.
I typically reach out to the local hospital to provide basic information about FPIES as well as to ask any questions I may have that are unique to my children. If your loved one affected by FPIES wears medic alert jewelry, be sure it is up to date and be sure that your FPIES Emergency Plan is also up to date– bring at least two copies. If anyone requires any form of emergency medication (i.e. epinephrine auto-injector), check expiration dates and be sure to add it to your packing list. If there is contact information for a practitioner on the emergency plan, consider sending a brief message or email letting the practitioner know that you are going out of town, in the event that an ED practitioner at your destination needs to contact them during an FPIES reaction.
If visiting with family or friends, be sure that the responsible adults who will be around your child affected by FPIES are aware of how to prevent, identify and respond to an FPIES reaction. Depending on your child’s age and stage, have a discussion with him/her/them about keeping FPIES-safe during vacation. If you or another adult you are traveling with are affected by FPIES, be sure to inform at least one person on your trip the basics of preventing, identifying and responding to an FPIES reaction.
3. Eating Out!
Some families have been lucky to find restaurants that have some items on their menus that correspond to their safe foods lists! Check out the area you are visiting and see if there are any potential restaurants that your family can safely eat at. Connect with the restaurants in advance to ask about menu items (menus can differ in different areas of the country), food preparation practices, and to educate the restaurant about FPIES. If you have a trusted FPIES-familiar family member that lives near to the restaurant, they may be able to help you with your research.
4. Location Considerations
Sleeping at a hotel or rental property, sleeping at a family member or friend’s house, camping at the lake. . . wherever you are staying, you need to ask yourself the same basic questions:
● What foods will I need to prepare while I am there?
● What equipment will I need in order to prepare those foods (camping vs. hotel vs. family/friend’s house)?
● How much time will I need to set aside for food preparation?
● Will I need to share the cooking space with anyone else (i.e. in the event you are staying with a family member/friend, or sharing a rental)?
● Will I be able to prepare any foods in advance of my trip?
● What kind of storage space for food will I have at my destination and while traveling?
● Do I have cell phone reception in the event of an emergency?
● Are there any COVID-19 considerations related to my family’s unique needs and/or our intended travel destination? (See the note at the end of this post!)***
5. Create a Cushion
I cannot even count the amount of times there have been unexpected events, some big and some small, to which we have needed to respond. This is what we do to cope!
● Always pack at least two to three extra traveling meals or large snacks to account for getting stuck in bad weather or extensive traffic,
● Pack at least two extra days of medication and elemental formula (if someone in your group requires these),
● Pack a couple of extra towels or a blanket and pack at least one extra outfit for each person (more if you have infants and younger children)
● Pack hair ties/ headbands and a well stocked first aid kit.
I have traveled by myself with two young children during blizzards, a tornado, significant road closures. . . it all makes for great storytelling, but the planning was what helped us to navigate these instances far more smoothly.
Over the years, we have traveled overseas, to remote beach locations, to various states to see families and friends, and more! There is always a certain level of stress– though I think that is true to at least some degree in all traveling!– but planning and experience helps us to be more confident in embracing our adventures. FPIES is certainly an non-preferred travel companion, but with planning, preparation, and adaptations, vacations can be possible. So take a breath, take a minute (or a month!) to plan, and when you feel ready, I wish you all the best in creating unique memories to treasure for years to come!
***An important note. . . as of 2022, the COVID-19 pandemic is still with us and considering its impact on your personal family’s situation is essential, as each family has unique needs and potential risks. Pack high-quality masks for your trip that fit all members of the family over the age of two (kids need different masks than adults!) and be sure to account for a few extras. Though you may be traveling in an area where you don’t plan on masking (i.e. camping at a lake), unplanned travel changes can happen and it is good to be prepared just in case. You may also consider bringing a few at-home rapid tests– again, it depends on your personal and traveling needs. Check in with your traveling destination to see if there are any specific requirements in place and consider where you will be traveling— your mask needs may differ based on where you plan to visit (i.e. camping outdoors vs. visiting crowded indoor museums). Finally, when assessing your family’s risk level, tools such as covidactnow.org and the CDC’s COVID-19 travel page , here: https://www.cdc.gov/coronavirus/2019-nCoV/travelers/ can help you with your planning and preparation. Your family’s practitioner can be an essential resource as well, so be sure to reach out with any questions! Happy travels!
Written by Amanda LeFew, Co-Director The FPIES Foundation