FPIES

  • "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!

     

  • 10 Simple Fundraising Ideas to Fight FPIES

     

    31in31Our $31,000 in 31 Dayscampaign to fight FPIES is in full swing! Help the International FPIES Association (I-FPIES) continue to advance this condition and support FPIES patients and families throughout the year.

    Looking for easy, creative ways to get involved? We’ve got you covered with our top 10 list:

    1. LET THE PIES FLY FOR FPIES: Invite friends, family members, and co-workers to join you in a “Pie in the Face for FPIES” event. Participants make a donation to deliver a pie in the face to the person of their choosing. Get 20 participants to donate $25 each, and you’ve just raised $500!

    For a crowd, use shaving cream or whipped cream in a pie tin instead of buying or baking pies. FPIES families can get creative with their pies, using everything from cotton balls to pureed versions of their children's safe foods!

    2. ONLINE FUNDRAISING: Sign up online and raise money the easy way at https://fightfpies.causevox.com/. Once you register, it’s easy to share on all your social media sites to ask friends and family to contribute. Make sure to personalize your page, share your story, and let others know why raising funds is so important to you!

    3. DIME-A-HUNDRED: Place an empty 16oz water bottle on your desk or at the front desk of your office and ask your coworker to empty their pockets of dimes and drop them in. One full bottle of dimes is equivalent to $100!  Decorate the bottle with the picture/story of your FPIES hero.

    4. GARAGE SALE: Now is the perfect time for spring cleaning! Holding a garage sale to clean you’re your closets and bring in much-needed funds. Create a sign to let everyone know all money raised is being donated to the International FPIES Association and be sure to include a photo of your FPIES hero.

    5. MATCHING GIFTS: Ask your human resources or personnel department if your employer matches funds. If so, get the form and fill it out-–your donations could be doubled or more!

    6. DIFFERENT KIND OF BAKE SALE: Hold a “bake sale” that features only your child’s safe foods, with all proceeds going to I-FPIES. It can send a powerful message about the challenges of a limited diet.

    7. THONS! Cut-a-thon (hair salon), Mow-a-thon, Car-Wash-a-thon. You name it! Create a fun sign that attracts attention and ask for donations in lieu of payment.

    8. 10 DAYS OF $10: For 10 days, ask one person each day for a $10. At the end of the 10 days, you will have raised $100!

    dumdum9. CANDY JANE: Dum Dum Lollipops are a favorite of many FPIES families. Get creative with a fun way to display the lollipops (bouquet, treasure chest, etc.) and tell your story. Ask coworkers and neighbors to exchange a donation for a treat.

    10. BEST/WORST TIE for FPIES: For the cost of a donation, coworkers can enter a best or worst tie competition to raise funds for I-FPIES. Offer a prize and have the entire office vote at lunchtime. For extra fun, turn it into a small fashion show.

    These are just a few small ways YOU can make a big difference in the fight against FPIES. Thank you for supporting the International FPIES Association and patients and families living with FPIES. Make a Donation Today!

  • 4 Easy Things You Can Do NOW for National FPIES Awareness Day!

    National FPIES Awareness Day is this Wednesday, May 4th, and there are plenty of simple, proactive ways that you can make a difference.

    1. Go Teal and Gray
    HopeRibbon2016Download and display the official FPIES Awareness Ribbon (shown right) as your social media profile picture. The FPIES ribbon is a twist on the solid teal Food Allergy Awareness Ribbon. The FPIES ribbon has a touch of gray to symbolize how much is unknown about this "other" form of food allergy affecting the gastrointestinal system. You can also paint your nails teal and gray or wear those colors on May 4th AND share why you have done so.

    2. Take a Pie in the Face
    Want to have some fun AND spread the word about FPIES? Support the International FPIES Association by taking the Pie in the Face Challenge and sharing your video/photos using the hashtag #pieface4fpies. Need an alternative to pie? Creative FPIES families have put their own spin on the challenge by using safe whipped cream, mashed potatoes or cotton balls.

    3. Educate Yourself and Others
    Take some time to read up on the symptoms of Food Protein-Induced Enterocolitis Syndrome, and choose three facts to share with your Facebook friends by posting them as a status update on May 4th. You can also download and share our educational graphics debunking common FPIES myths:

    Myth #1: "It's Just the Stomach Flu"

    Myth #2: "it's Impossible to Be Allergic to Rice"

    Myth #3: "Only Young Children Can Have FPIES"

    4. Donate
    Donate now to the International FPIES Association (I-FPIES) and ask others to join you. Your generosity will help fund our research, education, awareness and advocacy initiatives throughout the year!

    Thank YOU for making the first National FPIES Awareness Day a powerful, effective platform for spreading the word about FPIES! Your voice matters and your support impacts the lives of patients with FPIES and their families.

  • 4 Easy Things You Can Do NOW for National FPIES Awareness Day!

     

    National FPIES Awareness Day is Thursday, May 4th, and there are plenty of simple, proactive ways that you can make a difference.

    31in311. Make an Impact
    I-FPIES is thrilled to launch our $31,000 in 31 Days campaign to fight FPIES! Proceeds support an exciting multi-center research study into the genetics and pathophysiology of FPIES, as well as important initiatives that are educating the medical community and supporting patients and families living with this condition.

    Help us reach our goal by donating to the International FPIES Association by May 31st.  We make it easy and secure to set up your own fundraising page, share your story, and ask friends, family, and coworkers to contribute. Get started today and stay tuned for more creative ways you can get involved in fighting FPIES!

    2. Go Teal and Gray
    FPIESFBPROFILE2017Download and display the official FPIES Awareness Ribbon (shown right) as your social media profile picture. The FPIES ribbon is a twist on the solid teal Food Allergy Awareness Ribbon. The FPIES ribbon has a touch of gray to symbolize how much is unknown about this "other" form of food allergy affecting the gastrointestinal system.

    3. Educate Yourself and Others
    Take some time to read up on the symptoms of Food Protein-Induced Enterocolitis Syndrome, and choose three facts to share with your Facebook friends by posting them as a status update on May 4th. You can also download and share our educational graphics debunking common FPIES myths:

    Myth #1: "It's Just the Stomach Flu"

    Myth #2: "it's Impossible to Be Allergic to Rice"

    Myth #3: "Only Young Children Can Have FPIES"

    4. Share the New FPIES Guidelines with Your Medical Team
    National FPIES Awareness Day is the perfect time to ensure that your medical providers know about the recently released international consensus guidelines for FPIES. Download and share these detailed guidelines for the diagnosis and management of FPIES, developed by I-FPIES in collaboration with leading experts on FPIES from around the world.

    Thank YOU for making the first National FPIES Awareness Day a powerful, effective platform for spreading the word about FPIES! Your voice matters and your support impacts the lives of patients with FPIES and their families.

  • 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: Abstract Highlights from AAAAI

    We're back from the 2016 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 five years we've been attending the conference.

    am16-log-480Our efforts to put FPIES on the conference agenda resulted in 13 sessions and abstracts focused on FPIES—and 10 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 links to 6 abstracts that were presented on FPIES:

    “Parents of children with FPIES report significantly lower quality of life and greater feeding difficulties in their children compared to IgE-mediated food allergy.”
    Quality of Life and Feeding Difficulties Associated with Childhood Fpies and IgE-Mediated Food Allergies
    Marion E. Groetch, Zara Atal, Anna H. Nowak-Wegrzyn

    "Delay in FPIES identification incur costs of specialist consultations, unnecessary (often-painful) procedures and the experience of multiple episodes."
    The Clinical Prehistory of Food-Protein Induced Enterocolitis Syndrome (FPIES)
    Valentina Pecora, Lamia Dahdah, Oscar Mazzina, Daniela Vessicchio, Alessandro G. Fiocchi

    “Most children with FPIES from our cohort attained tolerance earlier than 3-4 years. Certain foods were associated with a longer time to tolerance.”
    Factors Affecting the Attainment of Tolerance Status in a Cohort of Food Protein-Induced Enterocolitis Patients
    Eric C.K. Lee, Dianne E. Campbell, Sam S. Mehr

    “Half infants with milk-induced FPIES do not tolerate eHF [extensively hydrolysed formula], and need to be fed with an AAF [amino-acid formula], a condition associated with a delayed diagnosis.”
    Half Cow's Milk-Induced Food Protein Induced Enterocolitis Syndrome (FPIES) Require Amino Acid Feeding
    Sibylle Blanc, Delphine Deboissieu, Nicolas Kalach, Pascale Soulaines, Florence Campeotto, Marie-Pierre Cordier-Collet, Clara Malka, Isabelle Montaudié-Dumas, and others

    “Childhood FPIES and IgE-FA result in significant self-reported direct and indirect costs for health care systems and families.”
    Economic Impact of Childhood Fpies and IgE-Mediated Food Allergies
    Anna H. Nowak-Wegrzyn, Zara Atal

    "Early diagnosis and treatment seem to be essential for infants with FPIES with bloody stool."
    Clinical Characteristics of Non-IgE-Mediated Gastrointestinal Food Allergy: Analysis of Nation-Wide Web-Based Online Patient Registry
    Ichiro Nomura, Hiroko Suzuki, Tetsuo Shoda, Hideaki Morita, Kanami Orihara, Yukihiro Ohya, Hirohisa Saito, Kenji Matsumoto

  • Are You Having Fun Yet?

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

    Some of you read that title and looked at me cross-eyed, too tired to give me a response.

    Some of you are looking up from your knees while cleaning up a pile of puke that splashed all over your living room carpet while also managing to splatter itself on two adjacent walls. You are disgusted with me. I'm okay with that.

    Some of you probably just want to break into tears.

    FPIES can easily become your entire world. It's the doctor appointments, sure. It's the day-to-day making of meals, absolutely. But it's the fear and worry of the challenges to come—this is what can consume your world. It did mine.

    We had a time where we only had elemental formula and five safe foods. Her esophagus was inflamed from all the vomiting in her first year of life so they wanted us to wait before introducing any new foods. Once that cleared up we were given "all systems go" to introduce foods.

    [BIG PAUSE WITH A DEEP BREATH]

    ... but I wasn't ready. I was scared.

    I would have left her on those same five foods if it had not been for our doctor patiently pushing for challenges and a husband who gave me little nudges from behind when my heels were dug deeply into the ground. I always had to double-triple check that we were really going to risk a reaction. I'd say, "You're okay if we try milk today, right?" and he'd say, "Yes!" Three letters. One word. But it made all the difference.

    I needed to speak it out loud to help me accept it and propel me to actually do it.

    So we'd try it.
    And I'd freeze. For hours. For days even, it seemed.
    And if she passed – we tried it again.
    And I'd freeze ALL OVER AGAIN.

    Was it enough to consider it a pass? I'd think. She did hiccup – maybe that was a symptom. No-no. She's okay.... Right? Again. Try it again? Pass? Is this an official pass?

    I froze up so much during our FPIES journey.

    kayleeTrying new foods was maybe one of the worst parts of FPIES for me. But somehow, something started to change...

    We had a "pea party" when we introduced peas. (Get it? A tea party that served peas—tea set and all.)

    We got fun straws to drink up her introduction of cow's milk.

    We made homemade donuts for her first run at wheat.

    Trying new foods became our family's excuse for a little fun in our crazy intense FPIES lives. FPIES is hard enough as it is—for our kiddos, for us! It's a new flavor, sometimes a completely new texture. It's just all new. I didn't want Bella to associate fear with the challenges. I'm sure she picked up on my nervousness, and I was nervous enough for the both of us. What she needed was hope, a big hug and a whole lot of fun!

    Fun doesn't solve the anxiety and fear of an FPIES challenge, but I'm a firm believer that anxiety, fear, hope and fun can all sit in the same room together. For me, in the back of my mind I worried that we were creating a fun experience that could lead to a severe reaction. But better that than a miserable experience leading to a severe reaction...am I right?

    Life is what happens while we're busy trying to control FPIES. So in the midst of fear, anxiety, worry and concern—LIVE—be in the moment, and make it the best moment it can be. You might as well live the reaction-free moments to their fullest as they can't stop the actual reaction from happening.

    If fun seems too far out of your vocabulary right now, it's understandable. Fun didn't start at my first rodeo. I sat as a nervous spectator the first couple of challenges. But slowly, I made my way out into the arena. And eventually I found myself riding a bull.

    Turns out, the bull doesn't win.
    We do. We face FPIES every single day.
    And in the end... we take it by the horns!

  • 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!).

  • Countdown to Chicago: Part 1

    CountdowntoChicagoWe’re counting down to the 2016 FPIES Education Conference–-less than two weeks away! Today, one of our Travel Grant recipients Allion Yamamoto-Sparks shares her thoughts in a video diary as she prepares to make the trip to Chicago.

    Like so many FPIES parents, Allison has a long list of questions she hopes to have answered. The conference includes two Q&A sessions where FPIES families can have their general questions answered by our panel of speakers.

    Be sure to check out Allison's blog, where she'll be sharing her conference experience and what she learned with all of you. Thanks for sharing your journey with us, Allison!

     

     

  • Countdown to Chicago: Part 2

    CountdowntoChicagoThe 2016 FPIES Education Conference is one week from tomorrow! We're counting down to the big day with help from our Travel Grant recipients. Today, Sarah and Todd Owen share their video diary as they get ready for Chicago. Thanks for sharing your questions and excitement with us!

    There’s still time to reserve your spot for the 2016 FPIES Education Conference on May 7 in Chicago. Still on the fence? Here's the Top 9 Reasons to join us.

    For our friends who can’t make it, you can still connect with us on Twitter (@IFPIES) for live tweeting under the hashtag #fpiesconf. And we’ll be posting updates on Facebook throughout the day.

    We hope to see you on Saturday, May 7!

  • DO ONE THING: Notes from FABlogCon

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

    You guys. I’m here. At FABlogCon. It’s a conference for food allergy bloggers. But it’s so much more. There are bloggers, speakers, authors and medical experts. There are people working real hard to bring innovation to the allergy world. Like gluten test strips (strips that you could stick into food to see if there is gluten). Or people making smart cases for EPI pens so that kids and parents can be connected via their phones to get alerts when the EPI is too far away, to track and find expensive-to-replace EPI pens, and to immediately alert parents if an EPI pen is pulled. Amazing, right?

    fablogcon2BUT THEN there were Sun Cups. You know, like peanut butter cups but without peanuts or nuts of any kind. But with sunflower. AND they’re launching a newly modified version real soon –- one that is going to be even MORE allergy friendly. I tried one. Or two. Or like SIX of them today (shhhh, don’t tell!).

    But all these people – all these people here- they’re centered around this conversation, around food protection and advocacy.

    And you know what?
    I feel at home.
    These are OUR people, you know?

    They get us. They live, breathe, make, advocate and plan food. And it doesn’t feel so lonely when you put all of us together in a room.

    Thing is, here I feel like the kid sister. I’m just FPIES. I’m new. I’m a baby in the world of food allergies. And by that I mean, WE. We are FPIES. We are young. We are infants in the world of food allergies.

    But you know what big sis says:
    I just heard about that. Tell me more, they say.
    (I’ve heard this all weekend long.)

    fablogcon3You guys, they want to know us. They want to hear us. They know we exist, and more and more they are starting to know we’re here. And we’re finding our voice.

    I got to hear guest speaker Robyn O’Brien, a crusader who looks at the impact the food system is having on the health of children. I loved her. Like a whole lot. And she was talking about lots of good stuff but there were two things that she said that I held dearly in my heart as she spoke them:

    ONE. Advocacy and Love. That was the title of one of her sessions. It’s nice, right? She talked about the first year of having her child diagnosed with a food allergy. The grief, the anger, how mad she was. But then she realized that she was just angry because she loved sooo much. She shared that she at arrived at the notion that to love for a lifetime would bring change, but to be angry and mad would only lead to self-destruction. Love. You guys, it is love that drives us.

    TWO. I wished I had faster fingers on my phone so I could quote her directly, but she talked about the day when she will have a long silver ponytail. She wants to be able to look back at the now, look back at the work being foraged right now and KNOW she was there, that she made an impact.

    So here’s my thing. Remember how I said I feel like I’m the little sister? Like we, FPIES, are the little sister? We are. We’re not the same as our big grown-up food allergy siblings. They have given us big shoes to fill, they really have. And we need to grow into them. We have SO many commonalities, right? I mean we’re from the same family. But we are different. And we need our own voice.

    And Robyn says: DO ONE THING.

    fablogcon1And we can do this, yes? Robyn says it looks a little something like this:

    Start a book club.

    Host a movie night.

    Host an evening at school, at a church or at a preschool.

    Partner with a pediatrician or allergist.

    Start a blog. A company? Maybe a non-profit or a support group. Volunteer.

    Whatever it is. However you do it. Believe in your ability to create change.

    May we grow long silver ponytails and look back and say: We did that. We brought, sought and created changed. We gave FPIES a voice.

    And may the world respond and say, BRAVO!

  • 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!
  • First International Consensus Guidelines Released for FPIES

     

    The International FPIES Association (I-FPIES) is excited to announce the publication of the “International Consensus Guidelines for the Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome.” An executive summary has been published in The Journal of Allergy and Clinical Immunology (JACI), and the full document is available open access online.

    DownloadButtonThese FPIES guidelines were designed to improve quality and consistency of care for FPIES patients by offering clinicians recommendations for disease diagnosis and management. The guidelines address the following topics: Definition and Clinical Manifestations, Epidemiology, Diagnosis, Gastrointestinal Manifestations, Acute Management, Nutritional Management, Natural History, and Future Needs.

    The guidelines are the result of a three-year global collaboration led by the International FPIES Association and included the input of more than forty leading FPIES experts. Anna Nowak-Wegrzyn, MD, and Matt Greenhawt, MD, co-chaired the guidelines committee that led the effort to develop clinical questions about the diagnosis and management of FPIES. After extensive literature review and data extraction, draft recommendations were considered by an international expert panel that reached consensus on thirty recommendations.

    I-FPIES Founder and President Fallon Schultz says, “Dozens of FPIES experts from across the globe volunteered their time and efforts to make the I-FPIES guidelines initiative a reality. These first ever, standard of care guidelines for FPIES will fill a significant clinical gap. And beyond that, the guidelines will highlight opportunities for future research, inform health care coverage policy, and lead to needed educational programs.”

    The “International Consensus Guidelines for the Diagnosis and Management of Food Protein-Induced Enterocolitis Syndrome” were submitted to and approved by American Academy of Allergy, Asthma, and Immunology (AAAAI) as a Workgroup Report of the Adverse Reactions to Foods Committee.

    The International FPIES Association has a global dissemination plan in place for the guidelines that includes outreach to various clinician groups, including allergists, gastroenterologists, pediatricians, ER physicians, allied health professionals, nurses, dietitians, as well as parents and relevant advocacy groups. There will also be a national outreach plan to reach every allergist in the United States.

    For international outreach, the I-FPIES medical advisors and executive board will be traveling to major society meetings to educate providers worldwide, and the guidelines will be made available in multiple languages through the organization's partnerships.

    To find out more about the FPIES guidelines, visit the I-FPIES website: http://fpies.org/index.php/about-fpies/fpies-guidelines

    FPIES is a non-IgE gastrointestinal food allergy that manifests as delayed, profuse vomiting, often with diarrhea, acute dehydration, and lethargy. The most common triggers are milk and soy, but any food, even those thought to be hypoallergenic (e.g., rice and oat), can cause an FPIES reaction. Unlike most food allergies that produce immediate reactions such as swelling and hives, FPIES reactions are delayed and usually begin two hours after ingestion of the trigger food. In some cases, the child will have such an extreme reaction that they go into shock and need to be admitted to the ER for immediate treatment with intravenous fluids.

    There is currently no cure or standardized treatment for FPIES. Unlike common food allergies, standard skin testing and blood testing for specific IgE allergies are routinely negative in FPIES patients. Early diagnosis and treatment are important for preventing FPIES reactions; however, reaching a diagnosis is often delayed.

    About I-FPIES

    The International FPIES Association (I-FPIES) is a 501(c)(3) non-profit organization whose mission is to improve the quality of life for patients and families affected by Food Protein-Induced Enterocolitis Syndrome (FPIES). I-FPIES is a worldwide leader in FPIES awareness and the issues surrounding this condition. We seek to increase awareness by providing educational resources, support services, advocacy, and the development of groundbreaking research through our partnership with the medical community. For more information, please visit www.fpies.org or contact us at This email address is being protected from spambots. You need JavaScript enabled to view it..

  • 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 at School: Understanding Section 504 Plans

    An FPIES parent writes: Help! My son has FPIES and is starting kindergarten in the fall. How do I know if I need a 504 plan for him? Where do I start?

    section504Thanks for writing in! These are common questions that many parents have when planning for their FPIES child to start school. To help, I-FPIES has developed a guide for understanding the Section 504 Plan and putting one in place for a student with FPIES.

    Below are some links to assist you in determining if a 504 Plan is right for your child and how to get started in the process. For complete information and instructions specific to your district, please contact your local school district or access the U.S. Department of Education website at www.ED.gov.

    What Is Section 504?

    How Can a Section 504 Plan Help My Child?

    What Is the Process for Obtaining a Section 504 Plan?

    Meet the 504 Team

    Section 504 Sample Request Letter

    504 Document Checklist

  • 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.

Make A Difference

I-FPIES relies on the generosity of our supporters.

Donate today and let's change the future of FPIES.

Donate Now

Could It Be FPIES?

Learn from the experts about symptoms, diagnosis and treatment.

Read More

FPIES Diagnosis? We Can Help.

Start here for resources and support to navigate the journey.

Read More