Food Protein-Induced Enterocolitis Syndrome

  • "Food Hero" Shines a Light on FPIES!

    FPIES is highlighted in an uplifting new show "Food Hero Mimi Kozma."

    foodhero2The show follows Chef Mimi as she pays it forward by cooking for someone in need and bringing awareness to the community. On the series premiere, Mimi joins forces with Mike Schwartz from Hometown Heroes to help Landon, a young boy with Food Protein-Induced Enterocolitis Syndrome (FPIES). With help from Chef Mike's ABG, they prepare a special meal for Landon and provide him with a surprise he'll never forget.

    The show not only raises FPIES awareness, it shows how the support of everyday heroes in our community can make a huge difference in the life of an FPIES child.

    Please share this inspirational episode with friends and family!

     

  • 4 Easy Ways to Make an Impact on Rare Disease Day!

    This Monday, February 29th is Rare Disease Day, a chance to raise awareness for rare diseases as a global health challenge and foster support for those living with them. Instead of directing efforts toward one particular disease, the day is for the rare disease community to join as a whole.

    2016-rdd-partner-badge-768x230Rare Disease Day is a powerful reminder of the impact that rare diseases have on the daily lives of patients and their families. This year's theme certainly resonates with our FPIES community: "Patient Voice."

    The International FPIES Association is honored to be a Rare Disease Day partner and the only FPIES patient organization affiliated with NORD (National Organization for Rare Disorders). Click here for NORD's report on FPIES in the Rare Disease Database.

    rdd-social-profileWith just hours left until the big day, here are 4 simple things we can all do to come together and bring attention to rare diseases like FPIES.

    1. Share That You Care

    Simply download the Rare Disease Day logos to the right to display as your profile photo or banner for the day on February 29th.

    2. Handprints Across America

    If someone you love has FPIES, participate in Handprints Across America. There are two fun ways to upload your photo, share your story, and get the word out about Rare Disease Day!

    rdd-facebook-cover3. Say Thank You

    Living with a rare disease can be a long, lonely journey. Rare Disease Day is an important opportunity to thank those who help us along the way—family members, friends, physicians, teachers.

    4. Other Suggested Activities

    Here are simple actions you can take today in the U.S. and worldwide, from sharing your story to in-school activity ideas.

    Rare Disease Day harnesses the energy of those around the world with rare diseases — and the millions who care for and support them — to raise awareness and generate action. You can contribute to the collective cause by doing any of these things above!

  • A Breakthrough Year and the Road Ahead

    A Message from I-FPIES President and Founder Fallon Schultz

    Dollarphotoclub 81585815Today the International FPIES Association (I-FPIES) marks our fourth anniversary. Our organization was founded in September 2011 as the International Association for Food Entercolitis (IAFFPE) by a group of parents on a mission. We have grown into the leading global organization for Food Protein-Induced Enterocolits Syndrome (FPIES), dedicated to funding research into the causes, treatments and an eventual cure for FPIES; increasing education and awareness of the condition in the medical community and the public; and advocating for the needs of individuals with FPIES and their families.

    During the past four years, FPIES has emerged from the shadows as a real and growing global health concern. We are very proud of what this organization has accomplished in a relatively short amount of time. Significant progress is being made on every front, from awareness and support to advocacy and scientific research. Working together, our dedicated volunteers and other tireless advocates have brought about major change and created hope for thousands of patients with FPIES and their families.

    At I-FPIES, we started this movement to focus attention and resources on this poorly understood, little recognized condition. Our mission is to fight every day to bring us closer to the answers we all seek about FPIES and how to make life better for those it affects. Above all, we understand that these answers cannot come a moment too soon.

    A Few Highlights
    We started the year with our rebranding as the International FPIES Association and the launch of a fresh website filled with an array of new support resources, a more in-depth discussion of FPIES, as well as expanded advocacy, awareness, education, and fundraising sections. We also updated the organization's research mission and milestones and launched our Trainee Travel Grant program, which assists research trainees with an interest in and commitment to the advancement and research FPIES.

    In February, FPIES was on the agenda at the Annual Meeting of the American Academy of Allergy, Asthma & Immunology. In addition to hosting the I-FPIES booth with educational materials, our medical advisors presented a number of seminars and oral abstracts on FPIES. I was also honored to speak on FPIES from the parent perspective. In addition to spearheading the increase in presentations at AAAAI, I-FPIES has also been working to ensure FPIES is included in the discussion at the Annual Meetins of the American College of Allergy, Asthma, and Immunology (ACAAI) and North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN).

    This has also been a breakthrough year for FPIES research, as our Medical Advisory Board members published new literature on the condition and numerous publications resulted from I-FPIES initiatives. One trend to note has been the shift in focus from the provider to the patients, as evidenced by multiple studies into the quality of life for FPIES patients and the caregiver burden. You can help us advance this research today by participating in a new FPIES study from our Medical Chair Anna Nowak-Wegrzyn, MD, on the costs associated with FPIES, the impact of FPIES on quality of life, and the feeding difficulties in children with FPIES.

    HopeRibbonProfilePicThe first National FPIES Awareness Day took place on May 4, 2015! As the result of the International FPIES Association's advocacy efforts, the U.S. Senate designated this day. More than 1,000 supporters joined our national campaign by signing and sharing the I-FPIES petition to make this day official. In addition, families in New Jersey and Pennsylvania shared with Senators Booker and Toomey what National FPIES Awareness Day would mean to them, leading the lawmakers to sponsor and successfully pass Resolution 129 on March 27, 20015.

    As part of National FPIES Awareness Day, the FPIES community joined together to Take a Pie in the Face for FPIES. This amazingly successful challenge raised money to fund I-FPIES research, education, awareness and advocacy initiatives.

    What's Ahead
    We've come so far as a community, and the year ahead is paved with more milestones.

    Dollarphotoclub 72702765-1ICD10Food Protein-Induced Enterocolitis Syndrome (FPIES) finally has an official diagnosis code: K52.21! And on October 1, 2015, that code will take effect with the implementation of the new ICD-10 system. The code will enable more accurate diagnosis and allow us to track how common FPIES is, along with countless other implications. It is a game-changer for our community!

    Another landmark for FPIES is close on the horizon. The first consensus guidelines for the diagnosis and management of FPIES have been completed after two years of development. We worked with AAAAI to assemble an international working group that has created a complete document addressing all aspects of this condition. Stay tuned for exciting news on the guidelines coming very soon!

    Looking ahead to spring, we will be hosting our second FPIES Education Conference for patients and caregivers in Chicago. We received an incredible response from our pre-conference survey and can't wait to share more details and a robust agenda on the topics that matter most to you. We hope you will join us!

    You Make the Difference
    Your generosity has made all this possible. Your commitment and contributions support this one-of-a-kind, volunteer-run organization. Your time and your money support this worthwhile cause, and because of you, I-FPIES will continue supporting families, and continue to advance this condition for years to come. On behalf of the I-FPIES leadership, our medical advisors, our volunteers, and all the patients and families who benefit from your generosity, we thank you.

    We continue to be amazed by the courage and perserverance of the families we meet; we are energized by you. We still have many miles to go, but know that we are being heard.

  • A Smiling Face Is Half the Meal (Latvian Proverb)

    Featured blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series.

    Carrots and Peaches

     OR

    Peaches and Carrots

    However you order it, it still lacks…variety.

    THIS is the life of FPIES. Right?

    And this was our story, for sure.

    Bella was two years old. And Bella had five safe foods.

    I’m not sure what was worse—watching Bella eat her sixth serving of jarred sweet potatoes for the day (thank you, Gerber!) or the guilt I felt watching it all unfold. We had been specifically told to hold off on introducing new foods for a while, but somehow I felt responsible for the mundane meal plan.

    Half the MealLike a broken record, the voice in my head taunted me: Just learn to cook! Bake it this time. Kaylee, find more recipes. Do something! Or at the very least, spend a pretty penny on a qualified chef capable of making fun and different foods for your child. That’s the LEAST you could do!

    Over time, I learned a few ways to help quiet those voices and gain control over what was mine to control:

    Play with Textures

    Smush it. Ice it. Cut it. Or serve it whole! A single food can be experienced in many-a-different ways. Cube or mash those potatoes. Slice or arrange that banana into ways never imagined. FPIES parents are pioneers; I bet no one has done with food what we have created and imagined while serving another same old, same old meals to our little ones.

    Run with It (When You Can)

    FPIES has taught me that the kitchen is not as scary a place as I once thought! (Just don’t ask me to fry any chicken in the near future – just don’t, I am still recovering!) But ask me to attempt a rice flour pancake! Ask me to make a muffin without egg or dairy! I learned how to do it because of FPIES. Certain days bring a gust of creativity and energy to make new experiences of food for Bella. When that happens, I run real fast and real hard with it—and then stash it in the freezer for days when I’d rather watch Grey’s Anatomy!

    Half the Meal Blog 2Embrace the Mundane

    One of the harshest realities of FPIES is that some kids struggle to grow. For the parents facing this challenge, I applaud your strength, care and the battles you face daily. As a parent with limited foods to offer your child, remember this and remember it well: just do your best to keep them growing!

    The biggest battle you face is not ensuring your child has endless options and variety. The battle you face is growth and whatever possible nourishment you can bring to your child. Let that be enough for your plate! And if you have a rhythm, a daily plan of the same meal over and over, let that be enough.

    …After all, a smiling face is half the meal.

    Bring that to the table!

    Your child will remember that much more than the hundredth, thousandth, MILLIONTH eaten strawberry.

  • Advancing FPIES: Oral Abstracts from AAAAI

    We're back from the Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI), and FPIES awareness, education, and interest in the allergy community has grown exponentially in the four years we've been attending the conference.

    Our efforts to put FPIES on the conference agenda resulted in 15 sessions and abstracts focused on FPIES—and 12 of those were from members of the I-FPIES Medical Advisory Board. We're so grateful for the contributions of our medical advisors in advancing the dialogue on FPIES.

    Below are five oral abstracts that were presented yesterday on FPIES. Our special thanks to all the FPIES families who contributed to the three quality of life studies! The data in the caregiver quality of life study comes from attendees of our FPIES Education Conference, and the self-efficacy abstract was a study that I-FPIES shared online. Quality of life in FPIES has never been measured so FPIES families participated in groundbreaking research!

    AAAAI Oral Abstracts: FPIES from a HEDQ Perspective

    International Consensus Guidelines for Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome
    Jonathan M. Spergel, MD PhD FAAAAI
    I-FPIES initiative in partnership with AAAAI

    Trends in Provider Management of Patients with Food Protein Induced Enterocolitis Syndrome
    J. Andrew Bird, MD FAAAAI

    Caregiver Quality of Life in Food Protein Enterocolitis Syndrome
    Matthew J. Greenhawt, MD MBA MSc (Coauthored by Fallon Schultz, MSW LCSW)

    Assessment of Self-Efficacy in Food Protein Induced Enterocolitis Syndrome
    Audrey Dunn Galvin, PhD

    A New Valid and Reliable Parent Proxy Questionnaire to Measure the Impact of Food Protein Enterocolitis Syndrome on Children: The Fpies Quality of Life Questionnaire, Parent Form
    Jonathan O. Hourihane, MD FAAAAI

  • Building a Bridge to Understanding: Relationships and FPIES

     

    Food Protein-Induced Enterocolitis Syndrome (FPIES) is a physical condition but it comes with emotional—and relationship—issues too. Interactions with family, friends, and even strangers can get mucky and hard.

    relationshipsbridgeWhen communication breaks down and things get tense, it’s easy to assume those on the other side are heartless, ignorant or simply lack empathy, right? Even for the most seasoned veteran, FPIES is not easy to navigate and there is no clear-cut path. So instead of feeling defeated and frustrated, here are a few ways I work (daily!) to try and navigate the relational side of FPIES:

    Do Your Best to Do Your Best

    A year of counseling has taught me that I’m in charge of me, and you’re in charge of you. Simple to say; really hard to live out. Relationships are hard…for all of us. And throwing in something like FPIES that is not familiar to most makes it all the more difficult. So do your best to do your best. If a conversation is needed to better care for and protect your child, have it. If you feel you are not getting the support you need from friends and family, ask for it (nicely!). If you feel misunderstood and unheard, clarify and share. You’re not asked to nail it every day—just to work at doing your best.

    We all learn along the way that we can’t control others. We can only control how we take charge of our own lives and the lives of our children. Give yourself permission to allow the hard of life to make you really strong and beautiful.

    Watch for Displaced Emotions

    On the outside our daughter Bella was normal and perfect. Until she didn’t seem so normal. Navigating FPIES brought a range of emotions: anger, frustration, confusion, exhaustion

    Sometimes we can misplace those emotions without even realizing it. It’s easier to say someone doesn’t get it and get angry at them for it than to acknowledge the truth that maybe we’re all a little confused. I hate FPIES, partially because there aren’t cures or specific answers – or step-by-step instructions on living with it. But I don’t have to hate those who are just like me, baffled or overwhelmed by FPIES and how deeply it affects our family.

    Give Your Best Shot at Understanding…and Forgiving

     “Forgiveness is unlocking the door to set someone free and realizing you were the prisoner!” –Max Lucado.

    I found myself explaining FPIES over and over again. And most of the time, it wasn’t because anyone asked or cared—it was because I cared. When told that Bella had a food allergy, most people assumed it meant we carried an epinephrine injector. I felt the need to be clear, for Bella to be known—and heard. She’s old enough now to begin finding that voice. Just the other day in the back seat of the car she proclaimed, “Yeah, it’s because I have “awergies!” But for years, I’ve been her voice. I’ve wanted everyone to know, understand, and most of all, help keep my child safe.

    FPIES is never far from the mind of every parent whose child is fighting the daily fight. But unless someone has walked a mile in our shoes—those shoes that travel to countless doctor appointments, that trek from store to store to find the right foods, that sprint to intercept a forbidden cracker before it reaches a child’s mouth—they really can’t understand. Invite them in to understand, to try on these shoes. Provide the information to help them understand. But also try to accept that they can’t really, truly understand. And understand that they too have their own stories and struggles they are navigating (it never hurts to ask them what’s on their plate and seek to understand their walking shoes too!).

    When and if they fail, forgive. For yourself, forgive.

    Celebrate Those Who Stand with You

    We know an employee at the YMCA who greets everyone with gusto! He’s known for handing out licorice to all the kiddos and giving them all bear hugs! He kept giving Bella licorice, and I didn’t have the heart to tell him she couldn’t eat them—until a stack of licorice formed in the passenger seat of our car and I began to feel guilty for the waste. So I told him. Nicely. But I felt weird and almost ashamed (who tells nice people not to do nice things!). He responded by asking what Bella could have. At that point it wasn’t much, and I muttered out strawberries. He returned the next day with a carton of strawberries from the farmer’s market just for Bella!

    Along our journey there have been many gestures to celebrate and cherish. A chef on our family vacation came out personally to walk me through each step his staff takes to protect people with food allergies. It was the first time Bella got to place an order at a restaurant. Bravo, I say! Family members who have mixed, stirred and beat the oddest concoction of ingredients in the hopes of turning it into a child’s first cookie—amazing! These are our heroes!

    Who’s your hero? A chef? A beloved doctor or nurse? Or your family members and friends who have listened, cried, helped and supported your FPIES journey? Choose to think about them. Not the ones who don’t get it. Focus on the ones who do—who stand by you and with you—every step of the way (and remember to thank them for being so awesome!).

  • Eating Out with FPIES

    Whether it's a special occasion or grabbing a quick bite, most of us don't give dining out a second thought. However, a DiningOutCardrestaurant can feel like a potential minefield to patients and families living with FPIES.

    Our new section on eating out with FPIES includes a variety of resources to help ensure a safe, enjoyable experience:

    • Dining Out with FPIES looks at the steps you can take before you go and offer tips for a positive dining experience when at the restaurant.
    • The I-FPIES Dining Out Card is an easy way to highlight the foods your child must avoid and help ensure clear communication and safety in a restaurant setting.
    • Our partners at AllergyHome have developed this helpful guide to take some of the guesswork out of reading labels.
    • Looking for an allergy-friendly restaurant near you? Searching the Allergy Eats database is a great place to start!
  • FPIES and Parental Stress

    FPIES and Parental StressWe're been encouraged to see an increasing focus in the medical community on the parental stress and management of having a child with severe food allergies, including FPIES. More and more, physicians are looking at the consequences of this stress and how to best support families in their day-to-day struggles.

    Every day, we’re in touch with families who live with FPIES; as resilient as they are, managing the condition can be difficult and stressful. Medical professionals are becoming more aware of the impact that food allergies have on both patients and their families. But even those who live with a condition like FPIES every day need to be reminded of the extra level of stress those allergies can carry and the impact that stress can have.

    Food allergies bring with them a variety of emotions: feelings of fear and constant vigilance, a sense of being overwhelmed or always at risk. New anxieties may arise as parents go through the different stages of a child’s development. Adding to the stress, food allergies impact the daily activities that most families take for granted: social and school activities, meal preparation, relationships with families and friends, etc.

    Given the emotions and adjustments that families make to live with FPIES, it’s not surprising that caregivers feel the stress or have less time for themselves. It’s not surprising that a family living with FPIES can also be impacted by the financial burden, whether it’s lost work hours, medical expenses, or the cost of special foods.

    We all need to take the time to check in with ourselves and our families. Maybe FPIES is causing you significant stress; it can be helpful to discuss these feelings with a trusted family member, friend or medical professional or connect with other FPIES families in your region or online. For others, the stress builds slowly; FPIES is such a part of our day-to-day reality that we can lose track of what a huge impact it has on our lives.

     Here are a few more tips to manage the fear and anxiety we often feel as parents:

    Teach your child about their food allergies from an early age. The earlier they learn, the more empowered they will become. If you have an older child with FPIES, have them grocery shop and read labels with you, cook with you, or ask questions at a restaurant.

    Talk openlywith your child about their fears (and yours) and discuss ways to cope with these situations. For example: “I understand you’re a little nervous about starting preschool. I’m a little nervous too, and that’s okay. Let’s talk about how we can both be prepared ahead of time. Then let’s talk about how much fun you’re going to have there!”)

    The importance of self-care cannot be overstated. Parents who take good care of themselves take better care of their children. Take the time to do the things that make you feel good: read a magazine, eat well, exercise. You’ll be more relaxed and better able to manage whatever the day brings.

    Lastly, pay attention to the present moment. Sometimes we are so distracted by our thoughts of food trials and doctor appointments that we miss out on the present moment. Don’t miss out on the simple joy of reading a book together or hearing your child laugh.

  • FPIES Highlighted at PAAM 2015

    FPIES is on the agenda at PAAM 2015! The Pediatric Allergy and Asthma Meeting of the European Academy of Allergy and Clinical Immunology is being held in Berlin, Germany from October 15-17. PAAM brings together pediatricians and primary care physicians to learn more about the challenging scientific and clinical issues that relate to pediatric paam2015allergy.

    The following presentations represent the international effort to better understand FPIES, including a groundbreaking questionnaire on quality of life and ‪FPIES‬ from I-FPIES medical advisors Drs. Matthew Greenhawt and Carina Venter.

    Poster Viewing Presentation

    A new valid and reliable parent and child questionnaire to measure the impact of food protein enterocolitis syndrome on children: The FPIES Quality of Life Questionnaire (FPIESQL), Parent and Child Short Form
    DunnGalvin, Audrey; Greenhawt, Matthew; Venter, Carina; Hourihane, Jonathan
    University College Cork, Cork, Ireland; University of Michigan, Ann Arbor MI, USA; University of Portsmouth, Portsmouth, United Kingdom

    Thematic Poster Presentation

    Non-IgE mediated allergy to fruit: 2 cases report of FPIES and in vitrodendritic cell study
    Caparrós, Esther; González-Delgado, Purificacion; Moreno, Victoria M.; Velásquez, Laura; Flores, Emilio; Clemente, Fernando; Fernández, Javier
    Universidad Miguel Hernández, Alicante, Spain; Allergy Section, Hospital General Universitario Alicante, Alicante, Spain; Clinical Analysis Service, University Hospital of San Juan, San Juan, Spain; Pediatrics Service, Hospital General Universitario Alicante, Alicante, Spain

    Oral Presentations

    Food protein-induced enterocolitis syndrome: Oral food challenge outcomes for tolerance evaluation in a Pediatric Hospital
    Machinena, Adrianna; Dominguez, Olga; Alvaro, Montserrat; Jimenez, Rosa; Lozano, Jaime;
    Piquer, Mònica; Giner, Teresa; Dias, Marcia; Plaza, Ana Maria
    Pediatric Allergy Department, Hospital Sant Joan de Déu, Barcelona, Spain

    Characteristics of infants with food protein-induced enterocolitis syndrome and allergic proctocolitis
    Arik Yilmaz, Ebru; Cavkaytar, Ozlem; Buyuktiryaki, Betul; Soyer, Ozge; Sackesen, Cansin
    Division of Pediatric Allergy, School of Medicine, Hacettepe University, Ankara, Turkey

  • FPIES Is on the Agenda at AAAAI

    We're thrilled to see so many awareness-raising FPIES sessions at the upcoming Annual Meeting of the American Academy of Allergy, Asthma & Immunology (February 20-24)! Held in Houston, this is the premier event in allergy/immunology with thousands of allergists, immunologists, allied health and related health care professionals attending.

    This conference is an important opportunity for International FPIES Association (I-FPIES) to educate and advocate for FPIES patients to allergy experts from around the world. I-FPIES will be raising FPIES awareness throughout the event at our booth, as well as attending sessions and connecting with our partner organizations.  We look forward to sharing as many developments and insights as we can with you on our social media channels!

    The following sessions feature members of our Medical Advisory Board and Executive Board. If your allergist or other provider is attending this year's meeting, please let them know about these sessions!

    Sunday, February 22

    3312 Allied Health Symposia: Holistic Approach to Managing FPIES and Non-IgE-Mediated Food Allergies

    • Medical Management of FPIES and Allergic Proctocolitis (Stephanie A. Leonard, MD)
    • Nutritional Management (Marion E. Groetch, MS RD)
    • Psychological Aspects of FPIES and the Needs of the Affected Families (Fallon Schultz, MSW LCSW)

    3042 Allied Health Seminar: FPIES: Dietary Pitfalls and Practical Management (Rosan Meyer, PhD RD; Carina Venter, PhD RD)

    3016 Seminar: Non-IgE-Mediated Food Allergies (Jean-Christoph Caubet, MD; Anna H. Nowak-Wegrzyn, MD FAAAAI)

    Tuesday, February 24

    Oral Abstracts

    5605 FPIES from a HEDQ Perspective

    • International Consensus Guidelines for Diagnosis and Management of FPIES (Jonathan M. Spergel, MD PhD)
    • Trends in Provider Management of Patients with FPIES (J. Andrew Bird, MD)
    • A New Valid and Reliable Parent Proxy Questionnaire to Measure the Impact of FPIES on Children: The FPIES Quality of Life Questionnaire, Parent Form (Jonathan O. Hourihane, MD)
    • Assessment of Self-Efficacy in FPIES (Audrey Dunn Galvin)
    • Caregiver Quality of Life in FPIES (Matthew J. Greenhawt, MD MBA MSc)
  • FPIES on the Agenda at the ACAAI Annual Meeting

    FPIES was highlighted in several new presentations and posters at the 2014 Annual Scientific Meeting of the American College of Allergy, Asthma & Immunology (ACAAI) this past weekend. This year’s meeting provided practicing allergists with the knowledge and expertise they need to diagnose FPIES and improve the lives of patients.

    Special thanks to I-FPIES medical advisors Dr. Anna Nowak-Wegrzyn and Dr. Alessandro Fiocchi for their insightful, informative presentations on FPIES. Here's a brief summary of all the presentations and posters from the ACAAI Annual Meeting:

    Presentations

    annanowak-wegzrynSpecial Session: Unique Challenges for the Allergist/Immunologist in Children and Adolescents
    "FPIES, OAS and EE: An Alphabet Soup of Food-Related Disorders"
    Presenter: Anna H. Nowak-Wegrzyn, MD
    This session was designed to help participants diagnose and manage food protein-induced enterocolitis syndrome (FPIES), oral allergy syndrome (OAS) and eosinophilic esophagitis (EoE).
     
    AlessandroFiocchiSession on Adverse Food and Drug Reactions
    "Food Protein-Induced Enterocolitis Syndrome of Difficult Management"
    Presenters: A. Fiocchi, L. Dahdah, O. Mazzina, S. Corrente, C. Riccardi, S. Salvatore
    This session helped participants promptly recognize FPIES and the potential for this condition to manifest at a very early age as well as discussed how to better manage this condition from a dietary perspective.
     
    Posters
     
    Food Protein Induced Enterocolitis Syndrome (FPIES) to Sweet Potato in a Highly Atopic Child
    B.J. Lanser*, N. Rabinovitch, Denver, CO.
    Distinguishes FPIES from IgE mediated reactions and discusses the management differences, as well as, the unique management challenges posed by a patient with both FPIES and IgE mediated food allergy.
     
    Food Protein Induced Enterocolitis Syndrome (FPIES) in a Patient With Prior IgE Mediated Food Allergy 
    J. Giacinto Lawrence*1, P. Ponda2, 1. Roslyn, NY; 2. Manhasset, NY.
    Develops an increased awareness of non-IgE-mediated reactions when diagnosing or challenging a patient with prior IgE-mediated food allergy.
     
    Case Report: Cashew as an Inciting Food for FPIES 
    E.J. Feuille*, New York, NY.
    Describes classic presentation of FPIES as well as potential inciting foods.
     
    Food Protein-Induced Enterocolitis Syndrome (FPIES) Caused By Avocado 
    A. Doshi*, S. Leonard, San Diego, CA.
    Describes the clinical symptoms of Food Protein Induced Enterocolitis Syndrome (FPIES) and identifies common and uncommon triggers for the syndrome.
     
    Severe Sequellae of Dehydration in a Food Protein-Induced Enterocolitis Patient 
    M.A. Ruffner*1, J. Fiedler2, 1. Rutledge, PA; 2. Philadelphia, PA.
    Recognizes potential for severe dehydration in food protein induced enterocolitis patients.
  • Fundraiser Spotlight: Walk for Weah Takes Strides for FPIES Awareness

    On August 2nd, the FPIES community in Michigan showed their teal and grey pride as they walked for "Weah" and all children with FPIES. We applaud Jennifer Kandt for putting together this fun and successful fundraiser, which raised nearly $4,000 for FPIES research. Thanks to Jennifer for sharing her fundraising story and photos with us!

    Walk4WeahTell us about your Walk for Weah fundraiser.

    I designed the "Walk for Weah" fundraiser to be a fun, family-friendly summertime event. It was a less than 2-mile walk in the city of Northville, Michigan. The walk started at Ford Field, near a playground, and took us through a portion of the lovely residential neighborhoods. The walk included a stop for frozen yogurt at a local shop downtown Northville. The owner of the yogurt shop agreed to donate a portion of the proceeds earned that day related to our fundraiser.

    When planning this event, I recognized that many children impacted by FPIES may not have been able to eat at the frozen yogurt shop but I wanted to include activities that would draw as many participants as possible.

    We had almost 30 walkers including many family members, friends and a few of the local FPIES families. They all happily sported our custom "Walk for Weah" t-shirts and buttons, plus grey and teal balloons, the colors of the FPIES awareness ribbon. We raised nearly $4,000!

    What is your connection to FPIES?

    walk4weah2My sweet daughter Annaleah suffers from FPIES. She is currently 21 months old and was diagnosed with FPIES at 10 months old. She spent most of her first year of life very ill, reacting to most every food in my breast milk, as well as most all of the infant pureed foods. She was diagnosed with FPIES after a significant delayed reaction to rice cereal causing her to vomit for 24 hours, have loose bowel movements for 48 hours and become limp and lethargic.

    The fundraiser "Walk for Weah" was in honor of Annaleah. The event name was a cute play on words from her 3-year-old big sister Kennedy who calls her "Annaweah."

    Why did you want to fundraise for the International FPIES Association (I-FPIES)?

    Walk4Weah1My daughter is a patient at the University of Michigan allergy clinic and I-FPIES is considered the go-to authority for additional information and reference materials on FPIES by our doctor.

    In addition, over the last year, we received a large amount of support from family and friends to help us with the burden of caring for Annaleah. I knew I wanted to do something to give back to the community. I also wanted to do something that could connect us with other local FPIES families.

    Put all those factors together and, for me, I-FPIES was the right choice for our fundraiser.

    What was the most difficult part of the fundraising process? The easiest?

    The most difficult part, like any large project, is the commitment of time, resources and energy. However, I was ready and willing to put in whatever was needed to make this a success and it was well worth it!

    The easiest part was gaining interest to participate in the event. Those around us heard about our struggles with Annaleah's health for most of her life. They were excited to join us for the walk and happy to donate to this great cause.

    walk4weah3Any advice for others who are interested in organizing a fundraiser to benefit I-FPIES?

    If you are considering organizing a fundraiser – do it! Mention it to your family, friends and co-workers, and I am sure you will quickly get a lot of positive energy around the idea. My advice would be to create the vision and plan and go for it! Don't be shy to spread the word about your event. The amount of generous hearts out there is amazing! Lastly, don't forget to have fun!

    Ready to Create Your Own Fundraiser?
    Taking on a fundraising challenge is an empowering feeling. To learn more about contributing to our mission through fundraising, get in touch with us at This email address is being protected from spambots. You need JavaScript enabled to view it.. With these funds, I-FPIES will continue to make great things happen in our FPIES community!

  • Going Global: FPIES Awareness Spreads to Brazil

    We're excited to share this guest blog post from Renato Ashcar of FPIES Brasil, the official Brazilian branch of the International FPIES Association (I-FPIES). FPIES Brasil is part of our global mission to create and implement FPIES awareness campaigns and support channels in all countries where access to information about FPIES is critically lacking.

    girassolinstituteWe bring good news directly from Brazil. From Aug 28 to Aug 31, the 6th International Symposium of Food Allergy and the 8th Update Journey on Pediatric Nutrition took place in São Paulo. Both events were hosted by Instituto Girassol.

    Instituto Girassol is a multi-disciplinary team of health professionals specializing in nutritional therapy. The institute has 25 years of experience in supporting people with special nutritional needs. Its goals include: enabling adequate nutritional therapy, training health professionals, conducting and reporting scientific research, influencing public policies, and providing patients with guidance so they can receive free dietary assistance through public health services.

    Why is Instituto Girassol important to the FPIES community?

    neufeldetomaDuring Food Allergy Awareness Week 2014 (May 11-17), Instituto Girassol was one of the first Brazilian institutions to embrace FPIES Brasil. We joined efforts to raise awareness and educate the Brazilian public about FPIES during that week.

    The support from Instituto Girassol continued, and they granted a spot on their International Symposium of Food Allergy for us to present the first ever lecture about FPIES in Brazil for physicians and nutritionists.

    The outstanding talk was presented by a member of the FPIES Brasil Medical Board, Dr. Ricardo Katsuya Toma, MD. Dr. Toma is a Pediatric Gastroenterologist and an attending physician at both Hospital Israelita Albert Einstein and Universidade de São Paulo.

    Based on his studies, Dr. Toma stated that FPIES is not a rare condition! He presented a review of the medical charts on the Hospital da Criança da Universidade de São Paulo showing 24 potential FPIES cases in the last few years.

    In the audience was I-FPIES Medical Advisory Board member Dr. Jonathan Spergel, who gave us the honor of attending the first FPIES lecture here.

    At the same event, the first Brazilian scientific article about FPIES was released. It was written by another member of the FPIES Brasil Medical Board, Dr. Clarice Blaj Neufeld, MD, a Pediatric Gastroenterologist and attending physician at Santa Casa de São Paulo.

    imageDr. Neufeld discussed FPIES epidemiology, pathogenesis, clinical manifestations, laboratory and radiographic findings, differential diagnosis, treatment, management and evaluation. Dr. Neufeld has allowed the article to be published open access (with sponsorship from Danone Nutrição Especializada), so every physician will have a chance to read it. We will soon publish it on the FPIES Brasil website.

    And it went on... At the close of the 8th Update Journey on Pediatric Nutrition, our Nutritionist Renata Pinotti addressed the following topic: Are food allergies more severe and persistent?

    Dr. Pinotti is a Hospital Nutrition Specialist from Universidade de São Paulo who brilliantly explained about parental stress, the fear and anxiety these parents face, and the struggle of searching for "quick" answers regarding their child's condition.

    pinottiShe also observed that the number of families that have to deal with food allergies, specifically EoE and FPIES, is growing day by day. She also made clear that both are persistent conditions and their management can be hard and stressful, making it imperative that Brazilian physicians and nutritionists are aware of the social and familial impacts the diagnosis brings.

    "We need physicians and families face to join efforts and find the best way to support these children in their daily struggles, without scaring them or keeping them from socializing." Dr. Pinotti observed how important it is for us to bring positive answers to our children, no matter what condition they face, and reinforced that the parents should never be made to feel they are alone in managing these conditions.

    Finally, we are looking forward to meeting I-FPIES Medical Advisory Board Chair Dr. Anna Nowak-Wegrzyn in December at the XLI Brazilian Congress of the Association of Allergy and Immunology that will take place in Rio de Janeiro.

    We wish that together, more and more, we can bring FPIES education, awareness and action throughout the world!

  • Heart to Heart: Make It An FPIES-Friendly Valentine's Day

    Love is in the air! But for a child with FPIES or other food allergies, it can be challenging to make Valentine's Day both sweet and safe.

    youruleWith the big day fast approaching, we thought we'd share creative ideas that are inspiring us and some great advice for making the holiday safe for your child.

    • Grateful Foodie compiled this helpful list of allergen-friendly candies and treats.
    • If you can’t read it, don’t eat it! There's lots of helpful advice on keeping kids safe on Valentine's Day in this article featuring our medical advisor Terri Brown-Whitehorn, MD.

     

  • ICD-10 Code for FPIES Takes Effect on October 1

    Food Protein-Induced Enterocolitis Syndrome (FPIES) finally has an official diagnosis code: K52.21! The code will take effect upon ICD-10 implementation in just a few weeks on October 1, 2015.

    ICD10CODEforFPIESSecuring the ICD-10 code was an ambitious initiative for the International FPIES Association (I-FPIES). The condition did not previously have a specific code, making it difficult for the medical community to determine how large a percentage of the population has FPIES. We proposed a new ICD-10-CM code to the National Center for Health Statistics (NCHS) in 2012. The first specific diagnosis code for FPIES was approved in June 2013 (the code did not take effect right away due to the delayed transition from the current ICD-9 coding system to the new ICD-10 coding system).

    "The introduction of an individual code for FPIES is a critically important milestonefor the patients and the medical professionals taking care of them. The code willenable more accurate diagnosis and allow for tracking the frequency of FPIESdiagnosis. I am thrilled to see this happen because of the I-FPIES initiative."

    Dr. Anna Nowak-Wegrzyn
    I-FPIES Medical Chair and Associate Professor of
    Pediatric Allergy and Immunology at Mt. Sinai

    Make It Count! Using the Code
    The ICD-10-CM coding system is an international classification system that groups related diseases and procedures for the purpose of reporting statistical information. ICD-10-CM codes provide a uniform language, and thereby serve as an effective means for reliable communication among physicians, patients, and third parties. ICD-10-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.

    As of October 1, 2015, FPIES can be coded properly, but only if your physician and hospital use the new code. Use of these codes is critical to tracking and understanding the healthcare burden associated with FPIES.

    NCHS has classified the following code to designate FPIES:
    K52.21: Food Protein-Induced Enterocolitis Syndrome

    Bring this announcement with you to your next appointment and explain to your physician the importance of using the proper code.

    A Brighter Future Ahead

    "Approval of this ICD-10-CM code is exciting because it helps make theunknown known. It will allow for accurate classification of this condition andbring awareness of FPIES to a whole new level."

    Fallon Schultz
    I-FPIES Founder and President

    In 2012, our commuity helped us write a key page in the history for FPIES. Every letter or e-mail sent on behalf of a child with FPIES made an impact. And because of our collective voice, families who walk the same road in the future will be less likely to suffer from delayed diagnosis or a lack of treatment opportunities. Knowledge, awareness, research, funding: we are only beginning to know the reach this code will have.

    This week marks the fourth anniversary of our organization. All this week we will be highlighting ways that you can become part of the movement and affect real change. From your donations to your fundraising efforts to your time and your talents, our community is coming together in amazing ways. Together, we are making the unknown known (and we are not done yet).

  • ICD-10 Code for FPIES Takes Effect on October 1, 2016!

    The International FPIES Association (I-FPIES) is excited to share that the official diagnosis code (K52.21) for Food Protein-Induced Enterocolitis Syndrome (FPIES) will take effect in just a few weeks on October 1, 2016.

    Dollarphotoclub 72702765 1ICD10 v2Securing the ICD-10 code was an ambitious initiative for the International FPIES Association (I-FPIES). The condition did not previously have a specific code, making it difficult for the medical community to determine how large a percentage of the population has FPIES. We proposed a new ICD-10-CM code to the National Center for Health Statistics (NCHS) in 2012.

    The first specific diagnosis code for FPIES was approved in June 2013. The code did not take effect right away due to the delayed transition from the current ICD-9 coding system to the new ICD-10 coding system. The code was further delayed from its scheduled implementation in October 2015 due to a partial code freeze for ICD-10. I-FPIES leadership continued to advocate with the CDC and NCHS for the past year on behalf of our community to help ensure the code's implementation in 2016.

    "The introduction of an individual code for FPIES is a critically important milestonefor the patients and the medical professionals taking care of them. The code willenable more accurate diagnosis and allow for tracking the frequency of FPIESdiagnosis. I am thrilled to see this happen because of the I-FPIES initiative."

    Dr. Anna Nowak-Wegrzyn
    I-FPIES Medical Chair and Associate Professor of
    Pediatric Allergy and Immunology at Mt. Sinai

    Make It Count! Using the Code
    The ICD-10-CM coding system is an international classification system that groups related diseases and procedures for the purpose of reporting statistical information. ICD-10-CM codes provide a uniform language, and thereby serve as an effective means for reliable communication among physicians, patients, and third parties. ICD-10-CM codes are necessary for billing, insurance and medical records, disease management, treatment advances, research and national statistics.

    As of October 1, 2016, FPIES can finally be coded properly, but only if your physician and hospital use the new code. Use of these codes is critical to tracking and understanding the healthcare burden associated with FPIES.

    NCHS has classified the following code to designate FPIES:
    K52.21: Food Protein-Induced Enterocolitis Syndrome

    Bring this announcement with you to your next appointment and explain to your physician the importance of using the proper code.

    A Brighter Future Ahead

    "Approval of this ICD-10-CM code is exciting because it helps make theunknown known. It will allow for accurate classification of this condition andbring awareness of FPIES to a whole new level."

    Fallon Schultz
    I-FPIES Founder and President

    In 2012, our commuity helped us write a key page in the history for FPIES. Every letter or e-mail sent on behalf of a child with FPIES made an impact. And because of our collective voice, families who walk the same road in the future will be less likely to suffer from delayed diagnosis or a lack of treatment opportunities. Knowledge, awareness, research, funding: we are only beginning to know the reach this code will have.

  • Let's Raise Feeding Tube Awareness!

    ribbon 1

    Love a tubie? Deciding whether tube feeding could be right for your FPIES child? This week, we’re honoring Feeding Tube Awareness Week®--a time to promote the positive benefits of tube feeding as a medical intervention that saves and enhances lives! The theme of the week in 2017 is “Fueling Life” because feeding tubes make it possible for those unable to eat or drink enough on their own to get the nutrition and hydration they need for life.

    3561567The International FPIES Association (I-FPIES) is proud to be among the organizations participating in and supporting Feeding Tube Awareness Week®. The Feeding Tube Awareness Foundation is spreading the word about the life-changing impact of nutritional support. This week is also dedicated to raising awareness in the general public about the medical reasons children are tube fed, the day-to-day life of a tube-fed child, and connecting families in the tube-feeding community.

    Below are some valuable links to mark Feeding Tube Awareness Week®:

    The decision to tube feed can be a difficult one. This article from the Feeding Tube Awareness Foundation talks about making the choice, while this link provides a helpful overview about tube feeding. The Feeding Tube Awareness Foundation also provides this list of essential tube feeding resources for parents and caregivers to help in a child’s care.

    If you love a tubie, we encourage you to raise awareness by changing your profile picture on social media to the image on the right. This week is also a great time to share your story and experience with tube feeding. Let's get the word out!

     

     

  • Make It a Safe and Successful School Year!

    Ready for SchoolPreparing for school can be filled with mixed emotions for parents of a child with FPIES. Whether your child is starting kindergarten, preschool or attending a new school, you may find yourself feeling both excited and anxious. Becoming familiar with the school’s food allergy policies and collaborating with your child’s teachers and school administrators can help set your mind at ease.

    Planning is essential in preparing your child for school. That’s why we’ve compiled some tips and resources to help support you and your child for successful new school year:

    Tips for Managing FPIES at School/Daycare: These practical tips can help you and your child’s school keep your child safe while still enjoying and participating in school.

    Letter for Teachers and Daycare Providers:Our letter for educational professionals outlines essential information about FPIES for school providers. The letter is in Microsoft Word format so you can customize it.

    A Parent’s Guide to Section 504: Our guide to 504 Plans helps you understand this type of plan written by the school in partnership with the student’s family. A 504 Plan provides guidelines for changes in the classroom and in other locations/activities, all with the goal of providing a safe education.

    Food Allergy Training Modules for School Staff: AllergyHome offers this online training video to use for school staff training on the topic of food allergy. We worked with AllergyHome to include FPIES in section 9 of the module, which discuses other allergic conditions.

    Preparing for School with Food Allergies and Asthma:Kids With Food Allergies (KFA) hosted this free educational webinar featuring guest speakers David Stukus, MD and Michael Pistiner, MD. It answers common questions about how your allergist can help with back-to-school planning.

    CDC Guidelines for Food Allergy Management in Schools and Care Centers:The Center for Disease Control (CDC) has developed voluntary guidelines for schools and education programs on how to manage students’ food allergies.

    Above all, regular, clear communication with your child and the school can aid in successful food avoidance throughout the school year—make it a great one!

  • Make It an FPIES-Friendly Easter!

    When friends and family come together to create favorite Easter memories, those living with FPIES and other allergic conditions Eastermust also balance the fun and excitement with safety. We've compiled some helpful links to inspire and guide you when planning your Easter celebration.

    Kids with Food Allergies has developed two "eggcellent" Easter resources. KWFA's  Tips to Safely Celebrate Easter with Food Allergies includes fun ideas to celebrate at school and at home. And satisfy any sweet tooth with their 2015 Allergy-Friendly Easter Candy Guide.

    Avoiding eggs? One option is Eggnots, dyeable ceramic Easter eggs. Looking for food-free Easter Basket ideas? Check out this fun list.

    Fruit-WandsFruit can be a delicious, beautiful way to celebrate the day with your FPIES child. Check out this magical idea from our friends at Weelicious. And April showers bring fruit flowers with this delicious bouquet.

    Please share what you're doing to make this Easter extra special and FPIES-friendly!

  • Make It an FPIES-Friendly Easter!

    When friends and family come together to create favorite Easter memories, those living with FPIES and other allergic conditions must also balance the fun and excitement with safety. eggnotsWe've compiled some helpful links to inspire and guide you when planning your Easter celebration.

    Kids with Food Allergies has developed two "eggcellent" Easter resources. KWFA's Tips to Safely Celebrate Easter with Food Allergies includes fun non-food ideas to enjoy the easter-fruit-tray-227x300day. And satisfy any sweet tooth with their 2016 Allergy-Friendly Easter Candy Guide.

    Avoiding eggs? One option is Eggnots, dyeable ceramic Easter eggs. Looking for food-free Easter Basket ideas? Check out this fun list.

    Fruits and veggies can be delicious, beautiful ways to celebrate the day with your FPIES child. Check out these Easter Fruit and Veggie Tray Ideas.

    Please share what you're doing to make this Easter extra special and FPIES-friendly!

     

     

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