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!).

A Personal Account from the FPIES Education Conference

Travel Grant Recipient Shaula BrownThanks to Travel Grant recipient Shaula Brown for the following guest post looking back on her experience at the 2013 FPIES Education Conference. For those in our community who couldn’t share the day with us, stay tuned as the video will soon be available featuring some of the highlights and valuable information that was presented at the FPIES Education Conference.

After coming home from the 1st Annual FPIES Conference put on by IAFFPE, I am feeling grateful, renewed, and energized. I learned so much!

I was so excited to hear about the first FPIES Center to be launched at CHOP. We are lucky to have good doctors here in Denver, but I know others are not and I can only imagine the benefit of having so many doctors in one place focusing on FPIES care and research.

It was also very interesting to see the information being presented on chronic reactors as well as acute reactors. My son Ryan has had both types of reactions but tends more towards the chronic side. Our allergist has diagnosed Ryan with FPIES because of his acute reactions but told me that his chronic reactions are not FPIES and instead are just intolerances. It was great to see that chronic reactions are not only very real but are also a recognized part of FPIES. The charts that compared FPIES to other GI and allergy disorders were helpful too. I really got a better, more detailed understanding of the way FPIES works. I also feel more confident in managing the daily issues that we’ll face, from food trials to how to handle FPIES in social situations.

1390623_641234089255917_1757669574_nI can’t begin to describe to someone with a healthy child how lonely and isolating this world of FPIES is. I feel alone, confused and discouraged so often, but the conference let me see that I am not alone. The chance to meet and connect with other parents and even some older children with FPIES was a huge gift. It let me know that I am not in this alone, I am not crazy, and we will get through this—we will survive this! The conference also helped me to understand that my needs as a parent and caregiver are important too.

I am fired up and energized to help spread the information I received to others. I am hoping to meet with other parents in my area to share what I learned (and hopefully turn that meeting into a regular support group). Ryan’s pediatrician also asked if she could get more information from the conference to educate herself, the other doctors she works with, and her other patient with FPIES. I can’t wait to pass along the information to her!

As much I got out of the conference, I know there is still more to learn and more to share. I’m excited for the conference video to come out so that others can see the highlights and get a sense of how special it was for our community to connect and learn together. I am already looking forward to next year’s conference with the hope I can attend again. I want to thank IAFFPE for the generous travel grant that allowed me to attend the conference. I am so thankful I was chosen and can’t wait to work more with them in the future!

We Have a Winner!

Brown Family IAFFPE Travel  GrantIAFFPE is thrilled to award Shaula Brown our $500 Travel Grant to attend our 2013 FPIES Education Conference in Philadelphia, PA on October 20th. Shaula is the mother of 7-month-old Ryan, who was recently diagnosed with FPIES after many months of pain and uncertainty. Our travel grant program seeks to encourage and support families in need, and Shaula’s award will enable her family to cover conference-related expenses such as airfare and lodging.

The Browns have faced the same challenges that so many FPIES families face: the pain and worry of a delayed diagnosis; the lack of a cohesive team to guide them; the stress and monetary burdens. Shaula had a strong desire to attend the conference but it wasn’t financially possible to make the trip from her home in Colorado. With no safe foods, Ryan’s only source of nutrition is costly elemental formula that is not covered by the family’s insurance.

“I can’t even begin to fully express what it to means to me to be able to attend the conference and to get the support we desperately need,” Shaula said when we notified her of the award. She is excited to take on an active role to educate others about FPIES and spread IAFFPE’s message. She looks forward to sharing thoughts and videos from her conference experience with the entire FPIES community. Prior to receiving this grant, Shaula was already active in sharing her FPIES journey and raising awareness by blogging and guest blogging.

Thank you to everyone who applied for IAFFPE’s Travel Grant for the 2013 FPIES Education Conference. The decision-making process was a very difficult one, with so many worthy applicants and only a limited amount of grant dollars. We were touched by the compelling stories we received and plan to expand our grant program for future conferences.

We are excited to give this family the opportunity to find some hope and support at our gathering of parents and experts. Congratulations Shaula!