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!

Notes from FPIES Dads, Part 2

Notes from FPIES DadsLast Friday, we shared a Father’s Day post with insights from some of the dedicated FPIES dads we’ve met at IAFFPE. Soon after, we received a note from a dad with a valuable perspective. Dan is looking at FPIES from the rear-view mirror, as his daughter has recently outgrown FPIES. Here’s what he wants dads and moms managing FPIES to know:

What advice do you have for dads who are new to FPIES?

1. Trust Mom’s Intuition: If it had been up to me, Bella would have bulldozed through these issues. I would have pushed her and pushed her some more. I know now that if it weren’t for my wife’s 6th sense and strong voice, her persistence, patience and concern, Bella may have ended up much worst. My wife said something was wrong when breastfeeding. I kept pushing her. We stopped at a month. She was concerned about food allergies. I doubted her. The reality is that her fear was a healthy fear and something I’m learning to value.

2. Patience: Having a child with FPIES takes a ton of patience. You’ll need to plan everything way in advance—outings, travel, holidays, appointments, etc. Life is not normal. It’s really hard to understand at first but your child has different needs than most children, and those needs revolve around food.

3. Stress: No doubt, you and your child’s mother will have issues. You’re dealing with something that many other parents won’t have to. You won’t agree on everything, but make sure those lines of communication stay open.

4. Educate: Be prepared to teach doctors (and everyone else who matters in your life) about FPIES. Know that you’ll soon become a nutrition expert, which might help you lose 30 pounds (as it did for me!).

5. Hope: Though it can seem hopeless at times, know that for most there is an end to FPIES. To get through it, use common sense. Avoid triggers and read about nutrition that promotes healing of the gut. Hang in there. Stay by your woman’s side and remember that if you can make it through this, then you’ll have more endurance to make it through most anything…together.

What do you want FPIES moms to know?

It’s tough on dads too. Most moms have certain expectations about how they are going to feel with their children and what it means to be a “good mom.” I imagine most moms of FPIES children never expected the early years would be filled with such fear and uncertainty. Like many men, I just want my wife to feel like she has it all. Both of us had a vision of parenthood that was changed by the realities of FPIES.

Even if your child has only a few safe foods, give them as many choices as you can so they feel a sense of control. When our daughter was a toddler and had only a handful of safe foods, we did our best to give her variety within those foods by mixing up the textures and preparation.

As your child gets older, it’s important to still make prudent decisions but also remember that at some point most children with FPIES outgrow it. The only way to know is to introduce the foods that scare us most. Though it’s understood you never want to do anything to harm your child, it’s important to find a balance. Fear is normal and healthy; however, don’t let it rule you.

Thanks to Dan for sharing his insights!

Notes from FPIES Dads

Notes from FPIES DadsHere’s to all the dads who rise to the challenge and do so tirelessly and with so much love!

At IAFFPE, we’ve gotten to know some amazing fathers. We’re very fortunate to have several dads as part of our Executive Board. In addition, we met a remarkable group of dads at our FPIES Education Conference last October; they shared an immediate connection. We followed up with these dedicated dads to learn what advice they had for other fathers who are new to FPIES. We also asked what they wanted FPIES moms to know. There is no better time then Father’s Day to share their responses.

What advice do you have for dads who are new to FPIES?

“Give your wife some room to work, and make sure you are amazingly supportive of her. She is going to be on the front lines as you try to figure out safe foods. Get your hands dirty and make sure you do your part around the house so that she can concentrate on taking care of your baby.”

“The best advice is to reach out and ask for help. Lean into resources like IAFFPE and work on having a support group. My wife and I are always a team in supporting each other with the issues we are faced with. Educate yourself as much as possible and don’t be afraid to fight for your child and ask questions to make sure they have the best care possible. I know for me, having a game plan and the support of my family and friends is huge. It’s hard as a Dad to open up about these things, but the more you can surround yourself with help and support, the more strength you will have to deal with issues that come up.”

“Learn to cook weird food, wife is usually right, and patience.”

“I want to let new dads know that there is a lot of information out there and to make sure they look at as much as possible. And to make sure they receive that information from a reputable source. We may not be able to recite all of the medical terminology but that knowledge is empowering.”

“Dealing with FPIES on a day-to-day basis can be stressful for mom. It’s important that she regularly schedule some alone time to unwind and refresh. Whether she wants to spend it reading, going to the gym, or getting a manicure, she deserves her alone time. In our case, my wife finds running to be great stress release. She joined a local running club, and we coordinate schedules so she can go twice a week.”

“Although they have a hard journey ahead, it’s not the end of the world. A lot of changes will be needed to make their house a safe place (especially if they have more kids), but it can be done. Their social life will change quite a bit too, since only a few restaurants are able to receive children with food allergies, and parties and other social occasions will always be a “risk.” Luckily, they can rely on organizations (like IAFFPE, FPIES Brasil, etc) that can provide valuable information and support to help them on this journey.”

“FPIES isn’t a condition that we can ‘fix,’ but it is a condition that we can help successfully manage. As a husband and father, I feel like it’s my duty, my responsibility to fix problems that occur with my family – physically, mentally, emotionally. Whether a water main breaks, my child gets a nose bleed or my wife catches the flu, I want to take action to make it better. With FPIES, there is no quick fix. I can’t go to the drug store to buy a pill. FPIES is a long-term condition that must be managed daily.”

What do you want FPIES moms to know?

“We are together on this journey, and we have to always join forces. There will be hard times, but the stronger the team, the easier we’ll get through each challenge.”

“Know that you and your husband are in the same boat. One of the hardest things for me to watch was my wife struggle with our son and his food issues. Luckily, we are a great team and this journey has made us even closer. If you’re not on the same page, do everything you can to get there.”

“Dads also go through a very difficult time. In some ways, they lose their wives to the condition, and often feel left out in the cold as their wives dive into the support groups and boards. Make sure you remind them they are an important part of the process and involve them as much as possible.”

“While managing FPIES may, at times, seem overwhelming, you don’t have to take on the burden alone. Include dad as much as possible in the decision making. Whether you’re trying to figure out which food to trial next or how to deal with your insurance company, he may have insights or a different viewpoint that may be beneficial.”

“How frustrated dads are not to be able to fix it. And we may not express it adequately or often enough, but you are doing an amazing job. As terrible as FPIES is, it has shown me my wife’s strength and stamina.”

If you’re the father of a child with FPIES, we’d love to hear from you in the comments section below. What insights have you gained along the way?

A Smiling Face Is Half the Meal (Latvian Proverb)

Featured Blogger Kaylee Page

We’re delighted to welcome back guest blogger Kaylee Page. Kaylee will be sharing her perspective on life with FPIES in an ongoing series. Click here to read her last post.

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 Meal
Like 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.

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.