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 

A Special Preschool designed with Allergies in Mind

It's back to school time.  Time for school supplies and new backpacks, new clothes and fresh haircuts.  For families living with FPIES, back to school time means something else.  Time to worry if your child is safe at school.  Time to worry about every birthday treat, special snack or basic lunch that is served. Time to worry about educating teachers.  Time to worry that special allergy tables could isolate your child.

Imagine a school where the mission is to take that worry away.  A school where allergies are the norm.  A school with a zero reaction rate in its entire history. 

St. Stephen's pre-school in St. Louis, MO prides themselves on being a safe allergy-free environment. Laura Schulte founded the school 12 years ago after 2 scares with her own children who both suffer from multiple allergies.  She tried 2 different schools and ended up in the emergency room 2 days in a row with her boys.  She couldn't go back to work because she couldn't keep her children safe.

"It’s tiring and it’s isolating being a parent of an allergy child.  I cannot believe how alone I felt in this.  I remember thinking I never wanted anyone to feel like that," Schulte says.

She decided to do something about it, helping found St. Stephen's Allergy Free Pre-School.  The school is completely free of the top 8 allergens and then will further eliminate other foods as needed to accommodate children.  The school prepares all meals and all snacks.  Schulte oversees the grocery shopping and personally chops the fruits and vegetables for about 70 children a day.  Schulte prides herself on never having a child come through the school and have an allergic reaction.

The school also isn't just about keeping the kids safe.  It's about making them feel included.  There are no special allergy tables, no birthday cakes being passed around that every child can't enjoy. 

"If one child cannot have it then we just don’t have it," Schulte says.  "We don't separate the kids. The whole purpose is that everybody can sit and be together.  I think the majority of parents appreciate the all inclusive atmosphere that we have."

That all inclusive atmosphere makes St. Stephen's an attractive option to a lot of other children too.  Schulte says they get many special needs children, children who use wheelchairs or are autistic, or have diabetes.  She also says more than half of the children don't have any allergies or health issues.

Schulte says she knows FPIES children can be more complex than children with more mainstream allergies.  Every FPIES child is different, with different triggers. St. Stephen's might not be able to accommodate a child who can't eat anything, but she says they're willing to try.

She says parents have to be their child's biggest health advocate.  Most parents don't have a school like St. Stephen's near them so she offers this advice:

·  Look for a school that can accommodate your WHOLE child

·  Ask questions and come up with a plan before the school year starts (At St. Stephen's they help parents transitioning to public schools come up with a 504 plan which specifies no one with a disability, including food allergies, can be excluded at school)

·  Sit down and explain your child's allergies to the school nurse

·  Be realistic and honest with teachers and staff

12 years later Schulte's sons are now 16 and 14 years old and 849 children have come through the doors of St. Stephen's.  Schulte and her staff have learned a lot and Schulte hopes she's making a difference, helping these families feel there's a safe place for them. 

She says wherever you live, shop around and find a school that's a really good fit.

"You’re going to have people who think you are that crazy parent.  You have to thicken your skin a little bit because you are that crazy parent. You don’t want to be that crazy parent but you have to be that crazy parent."

Visit Allergy Free Preschool website here: http://allergyfreepreschool.org/home.html

Interview conducted, and article written by Victoria Warren.  Victoria is a television news reporter for the NBC affiliate in Boston, WHDH-TV.  Victoria is a parent volunteer with The FPIES Foundation Volunteer Advisory Board.  Follow Victoria on twitter @VWarrenon7. 

Our FPIES Story: Introducing Dr.Nichole Huff

Our FPIES Story

Nichole L. Huff, Ph.D., CFLE

My firstborn was a textbook baby, which was fitting because I prepped for motherhood as best I knew how—I studied.  I read parenting magazines and child development books and perused baby websites.  Surely my daughter read them too, never missing a milestone.  Parenthood seemed to come naturally, as did our decision to try for Baby #2.

As the ever-so-experienced mom of an 18-month-old, my prep for our son’s delivery was much more relaxed.  After all, I’d been there and done that.  How different could another baby be?

And so our FPIES story began.

At 11 days old, after an evening feeding, my son began to vomit.  Profusely.  From his nose and mouth came what appeared to be thick, undigested breast milk.  I tried to clear his airways, but couldn't work fast enough.  He began to choke, his body paled, and his arms and legs became lifeless.  My mother and husband worked to keep our son alive while I shielded our daughter from the scene, called 9-1-1, and waited for the ambulance to arrive.  My son’s cries never sounded so beautiful.

The hospital personnel were perplexed, as was the pediatrician during follow-up care.  It’s rare that a baby has a reaction to his mother’s milk, I was told.  After trying an elimination diet to no avail, I offered my son cow’s-milk formula.  The first time, he did well.  The second?  Two hours later, as we attempted our first family-of-four road trip, I yanked my eight-week-old from his infant seat while my husband pulled off of the Interstate.  My son’s vomiting was once again intense and he became pale and lethargic.  We spent the next two hours parked at a gas station as I held my baby boy, too scared to move.

Following my mother’s intuition (as our pediatrician was of little help, telling me It’s normal, that It’s likely reflux, and that Babies that young rarely have milk allergies), I tried a soy-based formula containing no milk derivatives, which seemed to do the trick.  His reactions didn't return until he was seven months old after having tried a jarred baby food.  Like clockwork, two-to-three hours later, my son was throwing up, losing color, and his body was becoming limp.  I retrieved the food label, and sure enough, milk was an ingredient. 

Luckily for us we had relocated for my husband’s work a few months prior and found a fantastic pediatrician who closely monitored our situation.  She also promptly referred us to a pediatric allergy specialist who properly diagnosed our son with Food Protein-Induced Entercolitis Syndrome (FPIES), specific to milk proteins.  She equipped me with information, taught me how to properly read food labels, and educated me so that I could educate those who interacted with my son.

Following his diagnosis, I cried.  A lot.  Partially because I was so relieved to have a medical answer to the food struggles we’d been having.  But also, I cried for the loss of normalcy that my son would experience.  I grieved for him, and for the “textbook” childhood he wouldn’t have.  I can remember sobbing uncontrollably in the aisle of a grocery store wondering if my son would be able to have a first birthday cake.  I decided that day that, yes, he would.  If my son had FPIES, then I would become an FPIES expert.  I learned to remove the world “normal” from my vocabulary, deciding to not only accept his dietary restrictions, but to celebrate them.  (And slowly understanding that no child was textbook, no family normal, and that most people were managing a life stressor of some sort.)

In the weeks and months that followed, I spent countless hours researching FPIES.  I spent evenings alone at different grocery stores, walking each aisle, carefully reading food labels.  I learned which brands were safe and which weren’t.  I tried recipes and adopted new cooking strategies.  I learned to make safe substitutions while cooking so that—quite literally—my son could not only have his cake, but he could eat it too.

Being the mom of a kid with a food allergy is challenging.  There is the constant fear that one wrong bite could send your child into shock or make them terribly sick.  Having now managed my son’s FPIES daily for four years (and having experienced a failed oral-food challenge at age two and a half), my approach to parenting has evolved.  We’ve taken those scary steps that every parent of a special-needs child faces.  From leaving your child with a babysitter to selecting a safe preschool to attending birthday parties and everyday events that are otherwise taken for granted.  And we’ve not only survived—we’ve thrived in spite of it all.

In the months to come, I will talk more about parenting a child with FPIES—not only as an FPIES mom, but also as a professor of child development and family relationships.  From talking with healthcare professionals, to friends and family, to educators, to childcare providers, to talking with your FPIES child.  I’ll discuss ideas for making your child feel included in a world that often ostracizes differences.  I’ll explore ways that you can take care of yourself (despite feeling overwhelmed as you manage your family’s own FPIES story).  If you have a special topic that you’d like me to address, please let me know.

It takes a village to raise a child. 

It takes an informed, understanding, cautious, and collaborative village to raise a child with food allergies.

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/ 

Reading Between the Recipes: How to Start Your Cooking Notebook Today!

Cooking with FPIES in mind can be quite an adventure! When using substitutions and often uncommon ingredients, there can be a steep learning curve involved in figuring out how to turn safe ingredients into a variety of interesting dishes and baked goods.

Fear not! Head over to the Cooking and Nutrition section of our website and find resources to help create an FPIES Cooking Notebook, an invaluable resource for all kitchen adventures!

What is a cooking notebook?

A cooking notebook is a type of journal used for keeping track of recipes, notes on specific products or foods, and what cooking methods/recipes have previously worked well (or those that have not worked). This resource can even provide a springboard into creating your own recipes! For individuals learning to cook in a new way not often discussed in commercial cookbooks, the cooking notebook is essential.

Let us take a look at the various tools and outline their uses:

•  Helpful Baking and Cooking Substitutions
• Keep this list handy when altering “traditional” recipes to suit your family's safe foods. Be sure to read the tips and list of additional resources for extra help!
•  Label Reading Tutorial
•  An essential tool in navigating the grocery store aisles when seeing safe ingredients for recipes!
•  Homemade Baby Food
• Crafting recipes for the smallest of gourmands? From cooking techniques to storage tips, this tutorial will be a wonderful stepping stone to getting started.
• Kitchen Equipment to Consider and its Uses
• Need help figuring out what kitchen equipment might be helpful to your cooking endeavors? Consider this list and then tailor it to your needs!
•  Allergy Friendly Cookbooks and Websites
•  Checking out cookbooks and websites targeted at allergy friendly diets can provide inspiration for creating your own recipes or simply provide a venue to seek out safe recipes for your family.
• Produce Washing and Preparation
• Wondering how to remove waxes from produce? This tool has a few options for thorough produce washing and wax removal.
• Quick and Easy Tips: Saving Money on a Food Allergy Diet
• Allergy friendly diets can sometimes drive up the costs of your grocery bills--- these tips can help learn ways to save money.
• Creative Tips for Food Preparation for Various Ages
•  Check out these lists of ideas for ways to help make mealtimes more interesting and appealing for all ages and developmental stages.

Now with these resources in hand, choosing an organizational strategy for keeping the resources together can be helpful.

I personally use a binder that has a combination of notebook style pages and plastic pocket pages that fit two different sizes of recipe cards. It gives me the versatility I need to keep my cooking endeavors organized.

Those who are particularly computer savvy may even want to keep on online cooking notebook, using a combination of organizational sites like Pinterest and self-created documents available for viewing in a database like Google Drive or the Cloud.

Whether using a simple spiral notebook with pockets, a three ring binder, or even a specific cooking notebook from a specialty store, keep one key concept in mind. Learning what structure and tools that will best meet your family's needs is essential to getting the most out of your cooking notebook.

Copyright © 2013, The FPIES Foundation

Post contributed by The FPIES Foundation Executive Board Member, Amanda LeFew. Amanda also blogs about her family's experiences living and cooking with FPIES at Baby B and Our FPIES Test Kitchen.