Building a Bridge to Understanding: Relationships and FPIES

Featured Blogger Kaylee Page

Featured Blogger Kaylee Page

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.

When 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
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!).

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

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

imageCelebrate 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!).

New Growth and Leadership for IAFFPE’s Medical Advisory Board

New MAB Chair Dr. Anna Nowak-Wegrzyn (L) and IAFFPE Founder Fallon Schultz

New MAB Chair Dr. Anna Nowak-Wegrzyn (L) and IAFFPE Founder Fallon Schultz

The International Association for Food Protein Enterocolitis (IAFFPE) is proud to name a new chair and three additional members to our Medical Advisory Board (MAB), which is comprised of the world’s leading experts on Food Protein-Induced Enterocolitis Syndrome (FPIES).

Dr. Anna Nowak-Wegrzyn will take on the role of MAB Chair. She is currently an Associate Professor of Pediatric Allergy and Immunology at Mt. Sinai Medical Center in New York, NY. The position holds a three-year term in the organization that rotates within different institutions.

Dr. Nowak-Wegrzyn shares the organization’s global vision and has an innovative agenda for her term. She has already made significant contributions to our community through research and clinical practice, and we are very excited about the future of IAFFPE under her guidance.

We also thank outgoing Chair Dr. Jonathan Spergel for his remarkable leadership and dedication over the past three years; we are thrilled he will remain a key part of our Medical Advisory Board.

IAFFPE’s Medical Advisory Board is composed of allergists, immunologists, gastroenterologists and nutritionists who share a common purpose to create global collaboration for the diagnosis, treatment, management and advancement of FPIES. The MAB advises the organization on FPIES education, awareness and advocacy initiatives while also providing medical review of our web content and educational materials.

As part of our effort to advance awareness and understanding of FPIES at an international level, we’re also thrilled to announce three new MAB members:

  • Dr. Jin-Bok Hwang
    Department of Pediatrics, Keimyung University School of Medicine, Daegu, Korea
  • Dr. Antonella Muraro
    Pediatric Allergy, Paediatric Department of the University Hospital of Padua, Italy
  • Dr. Ichiro Nomura
    Department of Allergy and Immunology, National Research Center for Child Health and Development, Tokyo, Japan

These additional members reflect the global nature of our research and initiatives. We are privileged and excited to partner with such an accomplished group of physicians, researchers and thought leaders!

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!

Towards a Better Understanding of Chronic FPIES

One of the greatest causes for confusion and frustration in the parent community surrounds the definition of chronic FPIES and whether it is representative of the condition. Whereas acute reactions are more commonly seen and documented in literature, we recognize and highlight the lack of literature representing chronic reactions; this contributes to the dismissal many families face from their physicians when describing symptoms.”

Chronic FPIES has been the subject of confusion and frustration for parents and physicians alike. Unlike acute FPIES, which typically presents with delayed, profuse vomiting, diarrhea, dehydration, and possible shock, the symptoms of chronic FPIES are often more “murky” and can be difficult to distinguish from other conditions.

“Chronic FPIES is an ill-defined condition characterized by intermittent vomiting, watery or mucous diarrhea, poor weight gain, and dehydration… In cases of ‘chronic’ FPIES, the differential diagnosis is even more difficult. The diagnostic boundaries, in particular with other non-IgE-mediated gastrointestinal food allergies are blurred, and it is difficult to differentiate this condition from them. This underlines the need for a precise definition.”

At IAFFPE we’ve been working diligently to make chronic symptoms part of the medical dialogue on FPIES. This blog post highlights some of our recent efforts and offers links to new medical literature that has broadened the discussion of chronic FPIES.

Efforts to Educate Physicians

  • FPIES Debunk the Myths PostcardThis past March, thousands of attendees at the Annual Meeting of the American Academy of Allergy, Asthma & Immunology (AAAAI) received this attention-grabbing postcard. It is part of our effort to ensure that allergists, immunologists, and other healthcare professionals become familiar with chronic symptoms.
  • We recently developed a new resource for physicians: “Clinical Manifestations of FPIES: Acute and Chronic.” IAFFPE Medical Advisor Dr. Anna Nowak-Wegrzyn developed this piece to broaden the dialogue on FPIES. Physicians who attended AAAAI received this handout—please share it with your medical team as well!

Chronic FPIES in Recent Medical Literature
This month, a special edition of the medical journal Current Opinion in Allergy and Immunology focused on FPIES. Four of the articles included sections on the topic of chronic FPIES.

More Work to Be Done
IAFFPE’s task force is hard at work developing the first consensus guidelines for FPIES. Chronic FPIES will be included in the discussion, highlighting the importance of differentiating related symptoms from other conditions.

In addition, we will continue to leverage our partnerships with organizations such as AAAAI and the National Organization for Rare Disorders (NORD) to educate physicians and advance the discourse on this poorly understood aspect of FPIES.

Hindsight: Our Journey Through FPIES

imageWe’re delighted to share a guest blog post from FPIES mom Kaylee. Kaylee’s daughter Bella (age 3 ½) has outgrown 3 of her 4 FPIES triggers and is well on her way to outgrowing her last trigger (soy). In this post, Kaylee shares her family’s journey to outgrowing FPIES and offers helpful guidance for other parents currently on the road. Thanks to Kaylee for sharing this powerful and inspiring message!

“Blech! Have you tasted that stuff?”

This is what we heard at every pediatrician appointment and ER visit when we informed doctors that Bella was on Nutramigen. I don’t blame them; the stuff smells—and tastes—absolutely disgusting. (Yes, I have tried it. And no, I’d never like to try it again!). But Bella found it quite fantastic and asked for it multiple times a day. Most importantly, she thrived on it.

But recently, she passed cow’s milk—a former trigger in our FPIES journey. Of course, OF COURSE, this was the result of an accidental ingestion at daycare. Better yet, it happened at the end of the day when her friend’s sippy cup had been sitting out a good eight hours. I figured, if nothing else, she’d get sick simply from spoiled milk.

I set up a game plan and brought her home. With my husband out of town, my dad came to stay the night.
We watched.
And we kept watching.
AND THEN SHE PASSED.

image…and she kept passing. Peas, beans, and more milk. All former triggers. We held our breath and watched her eat—and pass over and over again! Doctors told us she’d probably outgrow FPIES by 3 or 4 years of age, but it was just too hard and too far out to believe. And here we are…

This series of photos documents her last sippy of elemental formula. It’s awesome, and my head is still spinning in disbelief. But I think people expect me to be sobbing tears of gratitude. Yes, there are tears, and some of them are of deep, deep joy. But some of them are tears of relief, anger and exhaustion. I feel like the soldier, the gladiator and warrior, who just stepped off the battlefield—too beat up to fully bask in the glory of victory.

Many of you, I know, are still on the battlefield. You are in fight mode. Every day, every minute you are fighting for your child. Be it the 20 times you wash your hands while cooking your meal and their meal. Or the third meeting with the daycare provider updating and advising on how to properly care for your child and keep them safe. The advocacy. The late night Google searches. The extra thought that goes into leaving the house to ensure your child has enough (safe) food. The doctor appointments. The ER visits. All of it.

imageYou are fighting. And let me tell you: you are a warrior. Writing from a place of hindsight, I’d like to encourage you that while you fight, you also give yourself permission to do these things:

BE AGGRESSIVE BUT TAKE IT SLOW. As scary as FPIES is, it can almost paralyze a parent from any sort of action. And the truth is, there is no set way to do it right (or wrong!). Take time to set up a plan for yourself. For us, we set goals of how often we wanted to introduce something, and we factored in holidays and travel plans knowing that introducing foods required an ER at bay. If she passed, we kept going. If she failed, we gave her body time to fully come back. Milk gave us weeks of loose stools—not horrible—but bad enough that I held off until her stools returned to her version of normal before adding the next new food.

FACE THE FEAR. “Dan [that’s my husband], do you think we should try this one?” I found myself asking this with each new food, even if it was something I knew in my heart she’d be fine eating. I was just too scared. I needed to hear him say out loud that we should try it. Talking about the potential risk aloud also helped me embrace that risk. I’m not sure the fear ever goes away (until you start seeing them past former triggers). But both fear and hope can sit together. So let them!

GRIEVE. FPIES can bring with it countless waves of grief. On those days, it’s okay to sink your feet deep into the sand and let the waves hit and wash over you; some days, it will knock you right over. You may lay there for a while but you’ll always stand back up.

My most vivid memory of that grief: It was Thanksgiving 2012 and we put Bella down for her nap so that the rest of us could make Christmas cookies as is our family’s tradition. My heart ached. I watched all her cousins roll, frost and stuff their faces full of sugar and fun! I had intentionally put my child to bed so that she would avoid a chance of consuming trace amounts of a trigger. Later, we sat at the picture perfect table, full of food and holiday decorations, surrounded by family. Bella wasn’t eating solids at that time for reasons numerous and complicated but she had her big treat: ice cubes. I hid my face in my hands with tears streaming down. On the day when I was supposed to be most thankful, I was aching. It’s only in hindsight that I realize how necessary those moments of grieving were.

REST. Tired. Bone-aching tired. We had so much puke in our lives and so little sleep. I consider myself vibrant and young at heart, but that first year I was walking through a fog. Everything exhausted me. When I say rest, I encourage you to seek out sleep as much as possible. But I’m also talking about the kind of rest where you just stop and let yourself be. Renew. Journal. Walk. Reflect. Let the sun hit your face. You may only find it in 5-minute increments here and there—but when you find it, embrace it. Soak it in. Let it fill you up ahead of the other chaotic and exhausting moments of the day.

FPIES and the journey itself taught me and my husband about food and taking care of our bodies to a depth we didn’t anticipate. We also know now that our marriage can withstand the tests of sleepless nights, puke-filled car rides, and unexpected, unanticipated hardship. While no parent wants to watch their child journey through FPIES, we’re thankful for the good that can come from the hard stuff of life.

You (warriors, soldiers, and gladiators) are held so close to our hearts. We may be in the tent of recovery but we have not forgotten what it feels like to be in the thick of the fight. Today, let our victory be yours too. Trust that you will also survive—even thrive in and through—this journey of FPIES.

Q&A with Dr. John James: An Allergist with Adult FPIES

Dr. John JamesIn honor of Food Allergy Awareness Week, we’re delighted to share a special Q&A with Dr. John James, an allergist who lives with food protein-induced enterocolitis syndrome (FPIES). Dr. James is a board certified allergist with Colorado Allergy and Asthma Centers in Fort Collins, Colorado. In addition to the diagnosis and management of allergic diseases and asthma, Dr. James has a special interest in food allergy, atopic dermatitis, and anaphylaxis.

While FPIES is widely considered to be a condition of childhood, it can occur in older children and adults. We thank Dr. James for sharing his unique perspective and answering our questions.

What has been your experience as an adult living with FPIES? I did not realize that I actually had FPIES until my mid-30’s. Beginning in college, I started to experience adverse reactions, mainly nausea, vomiting and diarrhea, after the ingestion of seafood. For many years, I thought my symptoms were the result of typical allergic reactions after eating certain seafood such as oysters, clams and scallops. I realized that I tolerated shrimp, crab and lobster, but anytime I would ingest clams, scallops and oysters, I would experience a delayed adverse reaction, typically 2-3 hours after eating these foods. I would just try my best to avoid these foods. I would have accidental ingestions at times and like clockwork, I would have a reaction. I never experienced any skin or respiratory symptoms and never anaphylactic reactions. There was no specific therapy for my symptoms other than letting the symptoms run their course. This would usually take a few hours. Now, I am just very careful not to ingest any mollusks like clams, oysters and scallops. I can ingest crustacean such as shrimp, crab and lobster without any adverse or allergic symptoms, and I have no other adverse reactions to foods.

You bring a different perspective because you are also an allergist. Could you talk more about that? During my fellowship in allergy and immunology, I became very familiar with classic FPIES in children, which is typically triggered by cow’s milk, soy and cereal grains. I encountered many pediatric patients with this disease and became very familiar with the diagnosis and treatment of this disease. This was thought to be a condition that only affected infants and young children. I do not remember encountering this condition in adults until I realized my symptoms were typical for this disease. I started to think about this disorder when I saw adult patients who were experiencing similar adverse reactions, typically to seafood. It became more and more apparent that FPIES could occur in adult patients.

It’s been suggested that the prevalence of adults living with FPIES may be higher than reported, as adults may simply avoid the offending food instead of pursuing a diagnosis. What are your thoughts? I think this is probably true, but there are no well controlled studies in adult patients with FPIES. I do believe it is more common than we have previously realized. Clinical investigations are needed in adults with FPIES to gain a better understanding of the actual incidence and prevalence of this disease in adult patients.

What advice would you have for other adults living with FPIES? Adults who are experiencing delayed and adverse gastrointestinal symptoms (i.e., nausea, vomiting, diarrhea and symptoms of dehydration) following the ingestion of foods, especially seafood, should discuss this with their healthcare provider. Many times, these symptoms are attributed to a gastroenteritis, food intolerance and/or food poisoning. A referral to an allergy specialist can be very helpful in making the diagnosis of FPIES and establishing a proper treatment plan. Specific food elimination is the most effective form of treatment; this usually involves the avoidance of only a few select foods. Systemic anaphylactic reactions are not typically observed with FPIES.

Why are you passionate about working with IAFFPE? Support groups such as IAFFPE can be extremely helpful for patients and their families in dealing with the many challenges that specific diseases present. Navigating through the vast amount of clinical and scientific information can be overwhelming. IAFFPE provides a wealth of information from patients, families and healthcare providers to make this process a much more rewarding experience. Learning from each other makes a huge difference in the successful management of food protein-induced enterocolitis syndrome.

Any words of encouragement for families of young children who have FPIES? I would strongly encourage these families to work with their healthcare providers and an allergy specialist to establish the diagnosis of FPIES and to develop the most effective treatment strategy. Keep pursing this issue until all of your concerns are fully addressed and an adequate treatment plan implemented. Fortunately, some infants and young children do outgrow their reactions and are ultimately able to ingest the foods that previously caused their reactions.

 

9 Easy Things You Can Do for Food Allergy Awareness Week!

It’s Food Allergy Awareness Week, the perfect opportunity for each of us to raise awareness about Food Protein-Induced Enterocolitis Syndrome (FPIES). Join IAFFPE in spreading the word about FPIES and making the unknown known. Here are 9 simple things you can do right now:

FPIES Awareness Ribbon1. Use our FPIES Awareness Ribbon to the right as a profile picture on your social network.

2. Help your child color their own FPIES Awareness Coloring Sheet. Take a photo and share it with friends and family on Facebook or Twitter.

3. Share a photo in our Faces of FPIES gallery on Facebook. Let your network see all those beautiful faces we’re fighting for!

4. Join our email list to receive important updates from IAFFPE.

5. Organize a fundraiser to help raise tax deductible funding for IAFFPE. We’ve got tools and ideas to get you started with this rewarding process

Faces of FPIES FAAW 20146. You and your loved ones can wear their support for the FPIES community by purchasing FPIES Awareness Pins and Bracelets.

7. Watch one of our educational videos and share it with your community to raise awareness.

8. Read, learn from, and share NEW articles from the largest single publication ever on FPIES.

9. Make a donation to IAFFPE to support the work we do to improve the lives of patients and families living with FPIES.

Stay tuned to social media all week as IAFFPE honors Food Allergy Awareness Week, and be sure to share how you’re getting the word out about FPIES this week!