Global FPIES Day 2017: Steps4FPIES

We thank you for making every step count by joining with us in our ongoing efforts to build awareness, increase support and advance research for individuals affected by Food Protein-Induced Enterocolitis Syndrome (FPIES) for our 4th annual Global FPIES Day. 

This Global FPIES Day, we witnessed so many #Steps4FPIES! Whether it was through sharing your story with us and in your communities or changing your profile picture to build awareness, you helped to reach out and “start the conversation.” In writing blogs, contacting local media, hosting events or distributing FPIES informational resources to increase education, all of your efforts were an inspiration! Every voice matters, every experience shared today makes a difference for tomorrow.  

If you have not already done so, be sure to watch and share FPIES Myths, the newest FPIES awareness video given to this community by FPIES moms and volunteers Heather Martin, Jackie Morrow.  We thank Heather and Jackie and all those involved for their time and talents contributed to the making of this video.  

We were thrilled to hear a research update from Dr. Jeanelle Boyer, FPIES mom and researcher at Keene State College who is actively doing research on FPIES and the microbiome. Be sure to tune in to our youtube channel and get the updates on her research!

And, of course we are grateful to those listed below and to all who partnered with us to further the reach of awareness.

• Allergy and Immunology Foundation Australia (AIFA)
• My Kids Food Allergies
• CMNuA
• Feeding Tube Awareness
• SEIPA Quebec
• AusEE
• Allergy Punk
• Sarah’s FPIES Clubhouse
• Food Allergy and FPIES Mommy
• Kuhmilchallergie
• Neocate Nutricia
• No Biggie Bunch
• Hopecentric  
• NeedyMeds
• Allergy Superhero’s
• Turn it Teal
• Big Little Mommy
• TravelinFabFive
• Global Genes 

The need for awareness among providers and in our communities, alongside advancements in researching mechanisms, remains essential to continually building an increased understanding of this diagnosis and support for those affected by it. We remain committed to this work and we thank you for your support!

This post written by Joy Meyer, Co-Director/Co-Founder of The FPIES Foundation. 

Talking with Children about Allergies: A Guest Post

This post originally appeared on Hots & Olives, Joyful Living with Allergies and is being shared here today by author Margaret Hancock, food allergy and mom to a child with FPIES. 

Talking with Children about Allergies

I remember it vividly. I walked into the taqueria for chips and salsa and left with the stunning realization that I didn’t know how to explain allergies to my child. 

It was kids night at the local Mexican restaurant and as part of the festivities, a balloon entertainer went from table to table twisting into reality Weiner dogs and giraffes. My toddler daughter’s face lit up when she saw them while my own face winced. For those latex balloon configurations were an exciting novelty to her and an allergy trigger to me. 

I told her we couldn’t get one and she began crying. I consoled her and said another time. I told her I was so sorry and apologized for not being able to accommodate her very normal request. I agreed that it was sad. I looked to my husband to jump in. I wept into my margarita.

In short, I did everything wrong. 

The next day happened to be her annual check up and with the previous evening’s incident fresh on my mind, I asked the pediatrician about explaining allergies to a three year old. He told me she is smart and to tell her the truth. Every time we encountered an allergen, simply say “that makes mommy sick.” Repetition is key. Say it over and over again. “That makes mommy sick.” Saying different things, using different words, or stumbling over different explanations and looking to someone else for an answer is confusing at best, and terrifying at worst, to a young child. The concept that something making someone sick clarifies. 

He also said to never apologize or emotionalize it. For its not something to be sorry for or emotional about – it’s a medical condition the same way any other condition is. She will only be sad if I make it sad. She will only cry and emote if I give her permission to cry and emote. 

I thought this all made darn good sense, but I needed to see it in action. So the next time we were faced with a balloon opportunity, I knelt down, looked my daughter in the eyes and said “those balloons are beautiful but we can’t go near them. They make mommy sick.” She nodded her head, shrugged her shoulders, and said “oh, okay.”

Amazing! My child IS smart and DOES deserve the truth! 

Having the knowledge to say these simple few words in a matter of fact, unemotional manner empowered me. I felt like I had the necessary tool in my tool belt and no longer felt panicked that I would encounter an allergen with my daughter in tow.  

This also translated well when several years later, we explained to her that her baby brother had allergies, too. “That makes W sick” not only makes sense to her, but she can easily explain it to others. I overhear her use the same line to her friends when they question why W’s breakfast plate is piled high with hots instead of buttered pancakes. She says it matter-of-factly, unemotionally, and confidently.  

The simple truth at play!

This post was written by Margaret Hancock. Margaret is a writer, a mother to three including a toddler with FPIES, and an allergy navigator herself since the age of twelve. Margaret recently launched Hots&Olives, a blog dedicated to living joyfully with allergies that can be enjoyed at hotsandolives.blog