Living with FPIES: Advocating for Your Child in School and Childcare Settings

Living with FPIES: Advocating for Your Child in School and Childcare Settings
Nichole L. Huff, Ph.D., CFLE

As a mom of a child with FPIES, one of the hardest decisions I ever made was entrusting someone else to care for my son, living with FPIES, for the first time. And, truthfully, for the second time and the third time… and every time that’s followed since. Because every time someone new cares for my son, I have to explain FPIES and everything it entails—the most important of which is what can happen if he’s exposed to a trigger. It’s a bit much to squeeze onto the “Known Allergies” line of standard childcare paperwork.

Needless to say, initially it was just easier to avoid outside childcare. If an FPIES reaction was going to happen, it was going to happen on my clock. Although this approach worked for a while, my “live-life-in-a-bubble” system wasn’t a practical, long-term solution for our family. We had to learn to manage FPIES, and as a dual-income family, this meant learning to advocate for our son in childcare and school settings.

I feel blessed to say that for over three years now, we’ve successfully navigated a full gamut of childcare options (ranging from family members, to babysitters, to Mother’s Morning Out, to church nurseries, to fulltime daycare, to fulltime preschool). Slowly I let go of my fear-driven need for control, and I began to trust others. Instead of being my son’s bodyguard, I learned to be his advocate.

Over the last three years, I’ve followed a few simple F.P.I.E.S. steps when advocating for my child in school and childcare settings:

1. Focus.

When communicating with childcare providers or educators, focus on the facts. The fact is: my child’s safety depends, in part, on the attention given to his food allergy. Every snack, lunch, sippy cup, birthday treat, holiday candy, or crumb on the floor must be monitored. Every time my son eats or drinks something that I didn’t provide, the nutritional label must be read. Text, call, or email me anytime there’s a question as to whether or not a food (or ingredient) is safe. My son’s caregivers must be focused on keeping my son safe too.

2. Plan.

You can never be over-prepared when your child has a food allergy. Always plan ahead. At home, I have any unsafe foods clearly labeled. I have a “safe shelf” where my sitters or son can easily identify quick snacks or meals. I pack a healthy, safe lunch and plenty of snack options each day for my son to take to school. (And in years past when my son ate school-provided meals or snacks, I coordinated with the school to ensure that they knew how to read food labels and identify FPIES-safe foods).  

3. Inform.

When childcare providers or educators initially learn of your child’s FPIES, don’t be alarmed if they’re a little nervous. After all, you’re entrusting them with a lot. Help them learn to take the necessary precautions without treating your child differently. To me, it’s important to inform my son’s teachers that he’s just a normal kid who learns the same, plays the same, and loves the same as everyone else. His diet is restricted, but he isn’t. In our case, he’s just a rough-and-tumble, happy, sweet, smart little boy who can’t have milk proteins.

4. Educate.

Educating yourself on FPIES isn’t enough. You have to share what you know to others. Educate those who teach or care for your child on the essentials of allergy safety. In the case of FPIES, most reactions are delayed, and many need to be treated with fluid or IV resuscitation. With the help of your child’s physician (or using resources like those available at http://fpiesfoundation.org/emergency-care/), create an action plan. Also, most people don’t know how to read a food label for allergens. Educating others on basic allergy awareness is a simple yet effective way to minimize your child’s risk of accidental ingestion. As my son has grown, I’ve also educated him on his allergy and taught him to question the safety of new foods when they’re introduced.

5. Support.

Anyone who cares for my son has my number on speed-dial. I ardently convey that I am available at any time, for any question, big or small. In order to build a thriving, trusting relationship with childcare providers or educators, it’s important that I fully support them in their efforts to care for my son. I ask what I can do to more easily facilitate the management of his FPIES. Sometimes this means providing all of my son’s foods, other times it means visiting the school’s stock room to read food labels. I volunteer to provide safe foods for class parties and I’ve written blurbs for the parent newsletter bringing awareness to my son’s FPIES and offering suggestions for safe treats. By fostering communication between teachers, administrators, and other parents, I help to support the network of people who keep my son safe while I’m away.

Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at http://soapboxmommy.com/

Our History: Building a Strong Foundation

Our Families Beginnings:

Joy’s family:

Our son, Samuel, was sick for months before we knew his symptoms had a name.  Food Protein Induced Enterocolitis Syndrome is what the allergist confirmed after months of trying to pinpoint it on our own, with just the Pediatrician and Dietitian help.  We had been brushed off by several specialists in the hospital we were at and continued to be so even after receiving the diagnosis. FPIES, for short, is a delayed severe food allergy of the gut.  Reactions are delayed and can occur hours after eating, and in Samuel, and several others who experience chronic FPIES, reactions can be delayed days after introducing a new food, making it especially difficult to pinpoint.

Imagine my surprise when just before our son’s confirmed diagnosis, I joined a large online support group for FPIES and his same, bizarre, delayed symptoms were echoed in these ‘rooms’ – as if these mothers were standing there in my living room, and not spread across the country in these virtual rooms.  From unknowns in isolation we achieved understanding in empathy of other affected families.  Just as important as the support given and received were the tools shared.  These tools were pieces of several resources that moms were finding on their own, and coming together to share. The information shared here was very valuable- to each new parent, even to the veteran parents, learning new things daily about this little known allergy.

Amanda’s family

We started our journey with FPIES after the birth of our first daughter, Bridget, and still continue on this road, now with our younger daughter Caitlin, who also shares this diagnosis. When Bridget was an infant, we were very alone, living overseas and lacking medical support for a diagnosis we were attempting to newly navigate. Over the years, we learned to seek out the support she needed and how to cope with the day-to-day challenges that accompany this condition. When Caitlin was born, we were able to put everything we had learned to good use. Both of the girls react to multiple foods and eat very restricted diets-- FPIES is a very present part of our daily lives.

As a parent, I felt and still feel a strong need to connect with other families experiencing similar situations as ours. Every day, I hope that sharing our experiences and offering what we have learned along the way can help make some other family's lives a bit easier. I feel honored to be a part of The FPIES Foundation to help enable change for other affected children and their families.

Meeting on an FPIES Support Board:

Amanda shares:                                

When we first suspected that Bridget had FPIES and shortly following her diagnosis, I was hesitant to join the online communities for support. It seems funny now, looking back, but at the time I think I hesitated because somehow, joining would make all that we had been dealing with that much more real. For some time before joining them, I followed the groups on a large social support forum that had a special group for families of children diagnosed with FPIES.

One day shortly before my daughter's first birthday, I decided to start posting on the forum and honestly, I wish I would have joined these groups much sooner. I no longer felt so alone. There were parents, other families, who saw the same things happen to their children that I saw happen to mine. They were strong, positive, and empowered by reaching out to help other families, such as mine. What I discovered was an incredible group of parents, working hard to help their children have brighter days. Many of these parents were doing this with little to no medical or social support. All of the parents were happy to share information about how they approached food trials, where to find medical journal articles about FPIES, how to use baking substitutions, and so forth.

The parents there often commented how nice it would be to have all of this information centralized, so that new parents joining the community could easily access the tools that existed-- both the credible medical information and the day-to-day parent and family resources. By late spring of 2010, I started having these discussions about creating a place for this information with a now very close friend--- Joy Meyer, one of the founding families of The FPIES Foundation and current executive director. The seeds for the Foundation were planted!

Recognizing the Need:

Joy shares:

It was clear that, aside from the need for more and updated research, there was something large missing for FPIES:  a centralized location for all of this information to be housed. A location for medically responsible and reliable information was imperative; one that families could trust and that a medical provider could reference and learn from, as well. The unique understanding a parent has for FPIES as they watch it unfold before their eyes is with must be recognized -- each new trial, each accidental ingestion, each reaction, each food ‘pass’! 

At the time that I joined that, now large, support forum- I was member #69.  It quickly doubled in size as the months passed.  It seemed that although FPIES was rare, the amount of families joining was increasing quickly with no known reasons why.  With no diagnostic tools for doctors to diagnosis FPIES and with limited research, what happens to the families who don’t find this support forum?  Those who aren’t online or who don’t have FPIES knowledgeable medical providers? It took months for me to find the right doctor knowledgeable in FPIES to recognize the chronic case in my son, months of him being sick; all the throwing up, diarrhea, sleeplessness, screaming in pain, and losing weight.  What if it took even longer? What would families do to keep their children thriving when certain foods that they are feeding them, that are meant to nourish, are acting as toxins in their body?

Connecting with Families:

At the beginning of our children’s diagnosis, we both began a blog- a journaling of our struggles and successes, a sharing of recipes and tools. Having learned how empowering shared experiences were, we wanted to give back.  Families connected with us and soon, we both were meeting several other families- through our blogs, families on this large support forum and others.  These families, who were strong advocates for their children as well, wanted to reach out as well. They had interest in connecting the dots for future families, as well as providing resources and supportive services for today’s families. These were families that wanted to establish a non-profit foundation for FPIES.  This foundation would be a home for all these tools and resources, shared from families and the medical community, collaborating for the health of each child.

The Founding Period:

The founding board was comprised of these eight original families, spread as wide across this country as we have children spread across the spectrum of this allergic syndrome.  We knew it was vital to the foundation to have the insights from collaboration of voices.  These voices of professionalism, coupled with their diverse talents, would create the cornerstones of The Foundation for FPIES. Alongside our founding board, we invited esteemed medical advisors comprised of experts in the field of food allergy and FPIES diagnosis and management. We have always been very committed to providing a medically credible and reliable resource for this rare, oftentimes isolating diagnosis. 

Uniting and Nurturing the Voice:

Parents can be their children's best advocates.  We feel it is part of our responsibility as a Foundation to help support parents in this role. After our founding, we knew reaching out and helping families to discover their voices was essential. For the next step in our Foundation's development, we introduced family-friendly tools and resources addressing every step of living with an FPIES diagnosis. These include but are not limited to: a medical practitioner locator, an expansive and thorough question/answer section, and printable resources for awareness, daily living, and emergency situations. Living with a rare disorder can be extremely isolating-- we also provide tools for families to build support groups, to create new support systems.  

We have not forgotten the medical professionals that support our community. With an esteemed medical advisory board, we have developed tools for practitioners to better educate themselves about FPIES and to learn ways to connect with the families they serve. With the growing multidisciplinary additions to our medical advisory board and a panel of volunteer parent advisors, we continue to put a name and a voice to FPIES, empowering families to be strong advocates for their children, as well as empowering the medical professionals who care for our children living with FPIES to share resources and tools to make the everyday lives of FPIES children and their families easier.

The Road to Empowerment:
Today, we continue forging the road to empowerment for families and the medical professionals that support them. By following this path, FPIES awareness, education and research all remain at the forefront of our Foundation's mission. We are diligently working to deliver new educational initiatives for the coming year, directed at various facets and disciplines within the healthcare community. Once complete, these initiatives deliver tangible tools into the hands of those professionals who can in turn pass them directly to families in need of support and day-to-day resources. Furthering FPIES education will continue to raise greater awareness to this rare disorder.

This awareness, coupled with improved FPIES education for medical professionals, will set the stage for increased interest in FPIES research. More importantly under these initiatives, special projects, and the resulting increased awareness, children affected by FPIES will gain opportunities for improved quality of life and better daily FPIES management. Our children deserve to have brighter and more pain-free days. At The FPIES Foundation, we will continue to move towards achieving these goals as we maintain focus on the heart of what brought the Foundation together in the beginning—the families and the children we care for and empower every day.

This article co-authored by Amanda LeFew and Joy Meyer. 

Amanda LeFew is the mother of two girls diagnosed with FPIES. To read more about the family's journey, please visit http://fpiesfoundation.org/inspiration-stories-the-lefew-family/. Amanda is a founding member and Co-Director for The FPIES Foundation.

Joy Meyer is the mother of four, their youngest child, Sam is living with FPIES. To read more about the family’s journey, please visit http://fpiesfoundation.org/inspiration-stories-our-little-man/). Joy is a founding member, and Co-Director/Chair for The FPIES Foundation. 

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The FPIES Foundation Celebrates Anniversary

The FPIES Foundation Celebrates Anniversary with Huge Social Media Awareness Day

Allows families to Text-A-Wish to support Foundation’s Efforts

August 25, 2013 The FPIES Foundation is excited to celebrate its second anniversary of empowering, educating and helping families navigate Food Protein Induced Enterocolitis Syndrome, or FPIES. 

The Foundation is planning a week-long celebration leading up to August 31, 2013 honoring the medical professionals, volunteers, and most importantly, the families who help raise awareness.  These amazing, strong families live with this rare allergy every day and are the reason the FPIES Foundation exists.

The week launches Sunday, August 25^th, 2013 with an exciting social media campaign filled with inspiring stories and the latest FPIES information and awareness opportunities.

The week caps off with the most aggressive FPIES Foundation fundraiser to date.  On Friday, August 30^th we team up with the Wish Upon a Hero Foundation for a special social media awareness day.  FPIES Awareness will race across Facebook, Twitter and personal cell phones as people participate in our Text-to-Donate day.  Just text WISH on August 30^th to 80077 to donate $5 to the FPIES Foundation and its efforts to help families.

FPIES is a rare and often difficult diagnosis.  It is a delayed food allergy affecting the gastrointestinal tract, typically diagnosed in infants and young children.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can cause severe lethargy, change in body temperature and blood pressure, and often lead to hospitalization. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.

The FPIES Foundation’s roots lie with families, started by moms who saw a vital need for information and resources.

Foundation Chair Joy Meyer says, “As we go into our 3^rd year I am even more inspired to be a member of this community.  Families and medical providers come together every day to help children living with FPIES thrive.  We have this great community to thank for these growing resources, building awareness and support.”

Highlights this year include:

• 501c3 Non-profit designation
• A newly expanded website with an extensive FPIES “toolbox” to help families check symptoms, journal foods, and prepare for doctor visits
• A provider directory filled with FPIES knowledgeable doctors and specialists
• Launching “FPIES, Now I Know” an awareness video inspired by real FPIES families
• “Awarenessis Action” campaign with brand-new resources families can print out to help educate medical professionals and raise awareness in their communities
• An expanding Medical Advisory Board dedicated to a multidisciplinary approach to FPIES
• The formation of a Volunteer Advisory Board made up of active members of the FPIES community
• Social media outreach through Facebook/Twitter/Pinterest and the FPIES Foundation blog
• Awarded certification from HON (Health on the Net) Code, “the commitment to reliable health and medical information on the internet.”
• FPIESFoundation supported regional monthly gatherings, and tools to help families start their own FPIES Foundation meet-ups
• Participation in Feeding Tube Awareness Day, Rare Disease Day and Food Allergy Awareness Week

The work doesn’t stop here.  The FPIES Foundation is excited for the year ahead with plans to launch a first of its kind ‘For Kids’ page, including a Child Ambassador program where the focus is entirely on the child, and not only on the child’s FPIES.
We will continue partnering with organizations to increase awareness and education while lobbying to create standardized practices for FPIES diagnosis and treatment.

The FPIES Foundation is an Incorporated 501(c)(3)Non-Profit Foundation. It is a collaborative effort of several families affected by FPIES whose relentless journey has sparked the desire to help other families find their way. FPIES is often under recognized and poorly understood. The organization's founders identified a dire need for tangible support resources for both the affected families and the medical community. The FPIES Foundation is committed to providing a credible and interactive support resource for this rare, oftentimes isolating diagnosis. It strives to make the everyday lives of FPIES children and their families easier.

This post was written by the Executive Board of The FPIES Foundation