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!


Featured Blogger Kaylee Page

Featured Blogger Kaylee Page

She’s growing on Nutramigen, so that’s good, right?
I mean, good enough….right?
Why try milk?
Why ever try it!
Nutramigen is enough.

My train of thought chugged, huffed and puffed these words over and over for weeks—even months. There was nearly nothing that would convince me to try cow’s milk again. Not my husband. Not the doctor. Not the fact that she had reached the age when many start outgrowing FPIES. Not even our pending bill from the formula company!

Bella first exposure to milk led her to vomit seven times over 90 minutes. I knew if we tried milk again, we risked the possibility of a much more severe FPIES reaction like we’d had with soy.

fearFear is a reality of FPIES, isn’t it? We fear a repeat of that worst reaction. We fear we’re not reading the symptoms right. We fear we’re going too fast or too slow. We fear what can happen when we’re not around. We fear we’re not doing enough.  We can run, hide and try to mask it but there is a huge part of FPIES that is completely out of our control. And the unknown can be terrifically petrifying.

So what can we do? We try really hard to control what we can control…and keep these points in mind:

Embrace and Face Past Fails
I gave her soy…We didn’t have an FPIES diagnosis yet, just a good hunch that she had issues with milk protein. That’s why she was put on Nutramigen at 8 weeks of age. In the months to come, our pediatrician said to try a soy-based formula first before a dairy-based formula. So I did. I gave my daughter soy. She didn’t like it. She winced and turned from the bottle. I stubbornly made her drink two ounces. Two hours later, seven ER nurses and one ER doctor surrounded my daughter. I sat at her bedside, shaking and shocked.

I gave it to her. And I never wanted to be the one that gave her a trigger again. Better yet, I never wanted to see her that lifeless again.

Every time we introduced a new food, I’d tremble with fear. Even foods less likely to cause an FPIES reaction gave me fear. Because tucked in the deepest part of me was that image of my daughter in that hospital bed.

As a FPIES parent, we are constantly experiencing (and replaying in our minds) the trauma of FPIES. It can be easy to let the fear keep us from introducing any new foods. But it can also be exhausting to carry and suppress that amount of trauma. It’s not an easy thing for people to relate to; it can feel really lonely and hard to even to talk about. If you do talk about it, and nobody gets it, it leaves you feeling more disconnected and questioning whether the fear is real or legit. Fear is a very real part of FPIES and so is the trauma that led to that fear. Acknowledge those fears and past fails; don’t hide or bury them.  This will help you face the trials to come rooted in the reality of FPIES but not overcome by it.

A Food Fail Does Not Equal a Parenting Fail
Somewhere along the journey of FPIES, I internalized it. I took responsibility for it all. I was convinced that if Bella failed milk (or any food I gave her), then I had failed her.

You, me, we…are navigating a really difficult, muddy and confusing path. If a food is challenged and failed; it is a failed food challenge—not a parental failure. You have not failed anyone. In fact, you have succeeded.  How so? By doing your very best to care for your child. By making hard decisions on behalf of your child. You have successfully navigated one more step in the journey, yes? Let that be your focus. Let that be enough.

There’s Fear, and Then There’s FEAR

It’s okay to be scared.
Being scared means you’re about to do something
really, really brave.
– Mandy Hale

Fear is a pretty all-encompassing word for how we feel about the unknown and unpredictable parts of our lives. But not all fear is the same. Some fear is irrational and paralyzes us. Some fear is helpful and keeps us from danger. Some fear is rooted in the all-too-familiar, while other fear is rooted in the completely new and uncertain.

Sometimes I wondered if I was strong enough, if I could just pull it together, then I wouldn’t have the anxiety or fear. At restaurants or playgrounds or anywhere food was present, I found myself wiping and cleaning constantly. I assumed people thought I was weird. Maybe I was a little extreme (I’ll give ‘em that!). The truth was, I really didn’t know if there were crumbs of food on Bella’s hands…or shirt…or seat…or table—or what that would do to her.

My experience as a parent, and that need to protect my child vigilantly, was not something most moms I chatted with could relate to. And yet, I somehow expected them to understand, and worse, I allowed myself to be ashamed of those feelings.

When we’re talking about this kind of fear, this fear of FPIES, it’s a deep-rooted concern for the well-being of our child. That kind of fear is okay. You are not weird or weak. You are concerned. And it takes a strong and courageous parent to take that fear and choose to face it head on and charge forward with new foods and challenges.

So when it comes time to trying that new food or retrying that old trigger, remember, the fear—the concern you have—is just because you are about to do something really, really brave!

Featured blogger Kaylee Page shares her perspective on life with FPIES in an ongoing series. Click here to read her previous posts.

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


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.