From every corner of our world, COVID-19 has impacted us all in one way or another. As I sit here in my living room, in a state particularly hard hit, the evidence of this impact is all too clear. The stress, the risk of catching this illness, the changes in our routines. . .  and the obvious wrench that FPIES throws into the mix. What can a parent do?

Let’s start with the basics. Daily life with FPIES typically means a lot of label reading, ongoing food trials and diligent efforts to avoid reactions. Safe foods may also be dependent on only specific safe brands, depending on each child’s sensitivity to cross-contamination, additives and/or flavorings. Recently, it was reported that the FDA released a guidance entitled  “Temporary Policy Regarding Certain Food Labeling Requirements During the COVID-19 Public Health Emergency: Minor Formulation Changes and Vending Machines,” which could allow for substitutions being made to ingredients in foods without the need for noting this on the products’ ingredient lists. Though the substitution potential could seem minor to some, the impact on my daughters could be profound.

As a parent of two children affected by FPIES, this guidance concerns me, as accurate food labels can mean the difference between a relaxing afternoon playing in the backyard versus a frantic run to the emergency room with an extremely sick child. With the risk of exposure to COVID-19 now on our minds, avoiding the emergency room has become an even higher priority, making potential allergen exposures all the riskier.

This puts all of us in a tricky place—we want to further our children’s diets. We want to help them attain healthy, nutritiously balanced, and diverse meal plans. We also want to do everything in our power to keep them safe as they grow and develop. As we all look for ways to navigate these complicated times made even more complex by these labeling challenges mentioned above, here are some thoughts for moving forward:

  1. If possible, stick to as many whole foods as possible for your child’s diet. For instance, instead of buying a new strawberry fruit leather at the store, consider making some at home with fresh strawberries.
  2. Take advantage of fresh local produce that may be plentiful as we move into warmer months and stock up on your child’s safes, freezing or canning safe foods to use when they are scarcer in the fall and winter
  3. Take the extra steps to research new products if you do choose to introduce them. For instance, if strawberries and apples are safe, and you see a new product that only contains those ingredients, it would still be helpful to reach out to the company and inquire about their manufacturing procedures.
  4. If you cannot find the brands your little one relies on, ask around. Parents on support boards as well as your child’s dietitian and/or allergist can be great resources for learning about where to find your preferred products or about different brands other families have had success with in the past. It is not a guarantee to be a perfect match for your little one, but it can be a great place to start your research.
  5. Make a call to your child’s trusted brands and simply ask about the potential for substitutions to the ingredients being made due to the statement from the FDA—explain your concerns as a parent of a child with food allergies and why a substitution could be problematic for your child. Typically, most companies are willing to help when there is a health issue involved.
  6. For advice on food trials during the pandemic, ALWAYS consult your child’s medical team. Your child’s team will be best able to help you assess your child’s reaction history, his/her sensitivities, and his/her potential nutritional needs for diet expansion. Do not forget that your child is also one of your best guides and knowing his/her FPIES history is incredibly useful as you move forward.
  7. For tips on interpreting labels and a tutorial on what to say during a call to a manufacturer, visit our website and check out the detailed information on label reading.
  8. For tutorials on cooking with FPIES, from jam making to baking substitutions to food journals, check out our Online Learning Library.

These are trying times and adding FPIES to the mix can make for added complexities! Together, we can continue to share information to help one another navigate this road ahead and hopefully travel on to happier and healthier days moving forward.

This post was written by Amanda LeFew, Co-Director of The FPIES Foundation.