Talking about FPIES is a 3-part blog series by Angelika Sharma, FPIES Foundation volunteer.
How to Explain FPIES to Others
As the parent or caregiver to a child with FPIES, you regularly find yourself having to explain the needs of your child: first with family and friends, then in places such as daycares, at pharmacies, or even with doctors we have not seen before. While there may be words that just roll off our tongue, we want to take a moment here to consider going beyond describing the medical terminology or diagnosis and instead focus on our child’s specific needs. Every time we share about FPIES, it is an opportunity to create a form of engagement that will ultimately improve our child’s well-being and potentially that of others, too. Creating engagement can be easy when we are clear on key points.
The diagnosis is a helpful label, and your child’s needs go beyond that label.
While the term FPIES usually leads us to either spell out the letters, help with the pronunciation “Eff-pies”, or perhaps even use the long form instead of the acronym, these explanations are really just scratching the surface of what living with FPIES is, or what being in charge of mealtimes with your child will involve. When FPIES was given a diagnostic code in 2015, it added a lot of support and confidence to parents advocating for their children. However, simply conveying that FPIES is a real condition does little for people new to this space in terms of helping them to be advocates for your child and their specific needs. For that to happen, the conversation needs to be primarily about your child’s unique requirements.
Key areas to discuss
When explaining FPIES to others, we want to focus on two things, with the latter being the more important one:
- Introduce the terminology and formal diagnosis and
- Focus on the child’s specific needs
Ideally, this will mean that the majority of the conversation will be focused on your child’s individual needs and how the person you are speaking with can support you and your child. If you are familiar with the 80/20 rule, the 80 here applies to focusing on the child’s specific needs.
When introducing the terminology and formal diagnosis you may want to keep this information to the points that are initially relevant while offering to expand. An often-used formula summarizes that FPIES
- Is a rare type of food allergy
- Can be triggered by almost any food protein
- Has symptoms that are delayed hours after eating the food
Remember, you can always supply more specific information on terminology, reference cards, or documents later. There are resources on communicating about FPIES linked at the end of this blog post, and you will find even more downloadable or printable resources across the FPIES Foundation’s website. Many of these resources are specifically designed to be shared with people who are new to FPIES and make an excellent follow-up to a brief summary such as above.
Once focusing on your child’s specific needs, you can position them in the context of the interaction or level of involvement this person will have with your child. The center of the conversation is how you handle the allergy day to day, or in a specific setting, and how they can support you. This is the conversation that explains the most actionable items, empowering the other person.
For example, a productive conversation with a new or prospective daycare could begin with, “Our child has a rare type of food allergy called FPIES, which we are happy to educate you and your staff more about. Specifically for our child, this means they can only eat the foods we pack for them. Can your daycare accommodate them by ensuring they only eat foods brought from home and nothing else?”
What we are doing here is introducing the terminology and offering more information, without immediately going into the details that can be and were so overwhelming even for ourselves at the start. Instead, we focus straight away on the individual needs of the child and open a conversation on whether key points necessary in their care can be adhered to. This way, we open the door for crucial communication to take place, removing the hurdle of complexity at this early stage. The focus is on creating room to talk and to establish whether key points in your child’s care can be fulfilled.
“What questions do you have?”
Now that we have begun a conversation about our specific needs as it relates to this rare type of food allergy, we can also open up to solicit questions by asking, “What questions do you have about caring for our little one?” It is worth noting the subtle difference in phrasing this question. In my experience, most people respond to, “Any questions?” with a, “No,” after little consideration; most of us do not want to appear as having misunderstood information. By asking, “What questions do you have?” we imply that there are questions and that it is OK to have questions.
A good way to wrap up an introduction to FPIES is to include a statement that a child’s needs may change: you might learn about new safe or trigger foods, and you will let them know about this change in case it affects their interactions or time spent with your child.
Next up: a deep dive on our needs when talking FPIES
In our next post of this Three-Blog-Post Series on communicating about FPIES, we will dive deeper into effectively sharing your FPIES needs. Identifying those needs is at the heart of preparing for meaningful conversations about FPIES. Talking About FPIES – Part Two: Effectively Sharing Your Needs with FPIES: https://fpiesfoundation.org/talking-about-fpies-part-two-effectively-sharing-your-needs-with-fpies/
Resources for you:
About FPIES https://fpiesfoundation.org/about-fpies-3/
Start the Conversation: https://fpiesfoundation.org/start-the-conversation/
Awareness flyers: https://fpiesfoundation.org/foundation-flyer/
Forms and Documents Library https://fpiesfoundation.org/resources-links-2/
Talking About FPIES – Part Three: Explaining FPIES to Your Child: https://fpiesfoundation.org/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.
