FPIES often begins in infancy. Your child may have more doctor visits than play dates before they can even say a single word. So how do you connect, engage and interact with them along the way?

As parents, our child’s emotional development is as equally important as their physical development. With limited support and emotional resources, talking to your child about FPIES can feel overwhelming, especially when you are coping with the changes and limitations yourself. When armed with tools, knowledge and education, your child can thrive and live confidently with FPIES. I-FPIES is here to offer a few tips to help support open communication and effective coping.

Safety and Care

As your child grows, it will become increasingly important to talk about their safety and emergency preparedness. For younger children, gentle reminders such as hand washing and avoidance of cross-contact are excellent first steps. As your child gets older, you may begin to advance their skills to label reading and feeling empowered to always ask what is in a treat before enjoying a bite! Keeping it simple, while taking time to talk through your plan of action in case a reaction occurs can ensure a positive outcome.

Try this:

  • Practice reading labels with your child at the grocery store or while cooking.
  • Practice with them on how to talk about FPIES with others. Something like this: “I have FPIES. It’s a food allergy of my gut. I need to be careful about what I eat so I don’t have a reaction.”
  • Talk about what happens when a reaction occurs. It could look like this: “If you react to a food, we will be here to help. If needed, mommy and daddy will drive you to the hospital so a doctor can take good care of you. We’ll be with you the whole time.”

Encouragement and Anticipation
Introducing new foods can be a challenge! Your child may be scared to try something new for fear of a reaction. Developing fun ways to introduce foods can help reduce fear. Provide encouraging words along the way—applaud, cheer and celebrate each food passed. If they pass one food, ramp up the excitement that more fun foods are to come. Take the time to build up anticipation to combat fear.

Try this:

  • Make it a party! For example, host a tea party and call it a “pea party” when trying peas.
  • Buy a fun straw at the store for their first sip of milk, fruit smoothie, etc.
  • Select a fun lunchbox and fill it with safe foods your child can bring to restaurants, parties and outings.

Patience and Acceptance
FPIES can mean a lot of waiting—for the next doctor appointment or the next food challenge. To help your child navigate FPIES, it is sometimes helpful to make things predictable. Map out what the next month of appointments and procedures will look like, discuss what will occur during an appointment. Role play testing and connect with other families experiencing the same or similar issues.

Help your child to define who they are, separate from FPIES. Discuss with them that many people have different types of allergies. Talk about how everyone has their differences and help them to embrace themselves as individuals.

Try this:

  • Make a chart—using stickers, markers and lots of color—to list out the appointments and upcoming food challenges.
  • Introduce your child to someone you know who has food allergies. Whether it’s a child or adult, they’ll like share an immediate connection.
  • Focus on your child’s personal talents and gifts. Have a budding soccer player? Help your child to identify themselves not by their diagnosis, but by the many talents and special qualities they have.

Instill Hope
FPIES comes with both the hope of outgrowing and the challenges of living with it. Maintaining hope is so important. It is helpful to talk through the day-to-day realities of FPIES. Try to also discuss the silverlinings of living with FPIES, even if it feels difficult to do so. Take time to share with your child the positive prognosis and lay out each of your hopes of how things could change over the months and years to come.

Try this:

  • Ask your child what foods he/she wants to try or is curious about. For example, if your child wants to know what ice cream tastes like, try to create your own version with foods that are safe.
  • Teach your child that it’s possible to feel anxious and brave at the same time, and not just regarding food. Use examples to illustrate this life principle.
  • Focus and celebrate passes in a big way. Host a mini “strawberry festival” or a “coconut smoothie” night.
  • Draw out a timeline of your child’s passes. A visual reminder of their dietary advancements helps to encourage hope and success!

Utilize Many Forms of Communication
Learning how to integrate food allergies into your child’s life (and your family’s life) takes patience, practice and communication. In talking with your child about FPIES, there are many different ways to connect and engage with them.

Try this:

  • Draw pictures to talk about the upcoming doctor appointment.
  • Look through a food picture book and identify which foods are safe and which ones aren’t safe.
  • Make up lyrics to a familiar song that can be sung when washing hands or making an FPIES- friendly dinner.
  • Most of all—do it—talk with your child about FPIES. Together you can face FPIES step by step!