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/