Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer.

Effectively sharing about your FPIES needs

In the early days after an FPIES diagnosis, parents learn so much: from information about the diagnosis to navigating their new everyday life. As their days are re-shaped and the focus is firmly on improving the well-being of their little one, they are also quite naturally required to share about this new diagnosis and the rare type of food allergy they themselves have just learned about. In this post, we are focusing on how to effectively share your FPIES needs, which really is meant to be a starting point for ongoing conversation. An ongoing conversation ideally also supports the parent or primary caregivers so they, too, can show up as their best selves in the care of their little ones. 

In the prior post of this series, we focused on how to explain an FPIES diagnosis. It focused on key areas to discuss, including how to keep the description of the diagnosis concise and emphasize the dialogue related to the care for the child. Yet, most people who hear the word ‘food allergy’ naturally jump to comparisons with allergies that are known to them. So how can we drive this crucial conversation in a way that steers away from comparisons with other allergies and instead focuses on the care of our child?  

4 Questions that will set you up for Success

The work on this begins with a focus on ourselves and our circumstances. The following four questions are an excerpt from A Mother’s Guide to FPIES (available on Amazon), and are intended to be brief writing prompts. You only need to reflect on these questions one time to set yourself up for success in many conversations thereafter. 

  • What do you know or consider to be safe or not? 
  • What does respectful action around your child look like to you? 
  • Can you name some of your fears for what is to come? 
  • What is important to you right now? 

You now have key points, focused on your child’s and your well-being, to summarize and to relay to others, points that will help you to know that your concerns and boundaries are addressed. You may even find that your answers to these questions above shape some key statements that you will share with many others.  

But what if those needs change? 

Many parents quickly notice how FPIES can keep us on our toes throughout food trials as new safe foods are discovered or as other foods become known triggers. It is worth reminding ourselves that we do not need to be the expert on FPIES or foresee the future of how or when things will change: we are the expert on our child right now, acting on the best information available to us. It is from this point that we share our needs with anyone else and those needs may change.  

If you want to, you can address this when first introducing someone to FPIES and your child’s needs: the needs may change and you will keep the individual updated. This is now an ongoing conversation you can pick up anytime you need to. 

Next Up: Explaining FPIES to your child 

In our next post of this Three-Blog-Post Series on communicating about FPIES, we provide insights on explaining FPIES to your child. While many children grow up not knowing any differently, it is up to us to choose the words we use around them, as they grow to speak themselves and one hopeful day, outgrow FPIES.  

Resources for you:

Kids Corner:

School Support for Kids: 

Forms and Documents Library

Talking About FPIES- Part One: How to Explain FPIES to others:

Talking About FPIES – Part Three: Explaining FPIES to Your Child:

“A Mother’s Guide to FPIES” goes further into detail on tailoring the message to your audience. 

This 3-part blog series is written by Angelika Sharma. Angelika is mom to Annika, a pandemic baby who was diagnosed with FPIES at 8 months old. Since leaving her corporate career, she focuses on writing and has published two books, including “A Mother’s Guide to FPIES” – a companion to parents with a new FPIES diagnosis.