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!).

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!

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.

Celebrating the Holidays with FPIES

Courtney Lopez - Celebrating the Holidays with FPIESIn this guest blog post, FPIES mom Courtney Lopez shares how she’s getting ready for the holidays and offers some helpful tips to make them FPIES-friendly. You can check out her blog Courtney’s Sweets here.

This Thanksgiving is the first real holiday that our daughter can eat solid foods, but it’s also the year she was diagnosed with FPIES. We try to make every day a normal day and her meals normal too. She has quite the variety thanks to many passes and few fails, but her fails are items that are traditional items in the holiday menu as well as processed in everything.

Holiday meals are special in so many ways. Our favorite part about Thanksgiving is going around the table and saying what we’re thankful for and enjoying a family meal together. It doesn’t matter if the main protein is turkey; it just matters that we’re all together. My daughter’s safe protein is salmon and right now we’re in the middle of a pork trial. If pork is a pass, then that will be our main protein on Thanksgiving, along with her FPIES-safe side dishes of mashed potatoes, corn, broccoli, and quinoa!

This Thanksgiving we’re thankful for all of our daughter’s passes and that we can finally enjoy a meal together. I couldn’t say the same just four months ago as her only safe foods were berries!

We’re going to be doing our holiday dinners at home so I can have full control over all of the food, but I know most people aren’t in that situation.

Don’t worry – there are options!

  • If you’ll be attending holiday festivities away from home, let your host know about your child’s safe and non-safe foods. Offer to bring safe foods for you and others to enjoy.
  • Prepare meals for your child in advance to bring to your holiday party or prepare them at the hosting house.
  • Serve your child first if it’s buffet style—the last thing you want is someone dipping another spoon into your child’s safe food!
  • Use disposable plates and utensils as there’s less risk of the plate being contaminated from an offending food.
  • When eating out with family, I’ve found the best items are those with a peel. Bananas, avocado, oranges, apples, and anything with a protective peel are GREAT while away from home. We like to refer to peels as a “built in wrapper” and pose little risk of cross-contamination.
  • Ask that no one feed your child without your knowledge, and watch children when playing. I’ve caught my nephews trying to give my daughter food and while they’re so sweet to offer, she can get very sick from their offering.
  • As a veteran FPIES mom told me, after you’ve been through the holidays once, you learn a lot and are better prepared for the next time. Don’t apologize for FPIES or worry about seeming over the top. After all, it would be far worse to end up in the ER with your child.
  • If your child doesn’t have many safe foods, serve them their safe food and let them enjoy being with everyone. Play games, take the emphasis off food, create new traditions, and just focus on being together. In that togetherness, we find the true spirit of the holidays.

We’d love to hear from you in the comments section on how you’re making the holidays safe and memorable for your child with FPIES. For more on managing the holidays with food allergies, please visit the following links:

Food Allergies and Holiday Memories (AllergyHome Blog)
Navigating The Holidays With Food Allergies (Kids With Food Allergies Foundation Free Webinar)