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!).

FEAR

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.
Right?

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.

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.

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.