Standing up for FPIES – Nicole’s story

Standing up for FPIES – Nicole’s story

Nichole with her mom

My daughter Nicole was diagnosed with FPIES when she was 4 years old.  She had struggled with chronic issues since 18mths of age and we were more than thankful to have a diagnosis.  Nicole has several safe foods, including Chicken, Eggs, EleCare Jr Vanilla, Apples, celery, zucchini, carrots and peas.  Nicole is currently a 4^th grader in the Chicago area and loves going to school.  She often struggles due to the strain FPIES puts on her body and the missed days, but has always loved learning and her teacher is amazing. 

A few months ago, Nicole told me about how the kids made up a game to not play with her because she eats chicken every day for lunch.  The kids would tease her and say they couldn't touch her because she smelled like chicken.  We have taught Nicole that she needs to stand up for herself and that she should just ignore the teasing.  She had friends and seemed to be handling the situation.  We try to not make a big deal out of it simply because this is her life and it’s not going to change. We want her to be thankful for what she can do, not what she can’t!

A few weeks ago, Nicole came home and said she wrote a letter to her class telling them that they had hurt her feelings and would they please stop.  Below is the letter (Rewritten by me but in Nicole’s words)

“Dear. Mrs. Class

I really hope you’ll read this because I don’t like the way you treat me because one day you made up this game don’t touch Nicole it real hurt my feeling and you alway whisper about it really really hurt my feeling and the game don’t touch Nicole just because I eat chicken I lost my friend because of that. So please read and listen. Sincerely, Nicole.”

I reached out to her teacher to find out if she had prompted the letter and her response is below:

“Good morning Mr. and Mrs. Pelters,

I am proud to say that your daughter wrote that letter without any prompting. I simply opened my mailbox Wednesday to find it sitting there. I read it, and nearly cried. I asked Nicole to meet me in the hall, and that is where I asked her if I could read it to the class. She said, "Yes." Then I asked when she would like me to read it. At first she said Friday, and then I asked, "Are you sure you want to wait until then?" She then changed her mind and told me to read it at the end of the day.

At the end of the day, I made sure we had enough time, and I had everyone ready to go and sitting on the rug. I have to say I had a hard time reading the letter, but when I was finished it was silent. We had a quick discussion about what they thought, and I can say that was one of my proudest moments of my class. They came to the conclusion that they were acting like bullies, and that no one should ever feel that way. We also talked a little about how limiting her diet is, and one student even said that it wasn't her fault that she has this condition.

Thank you for teaching your child the importance of voicing her thoughts and feelings. She has made our class open their eyes.”

I was blown away that my child had the forethought to write the letter all on her own.  Each of her classmates wrote her an apology letter and I have attached a few here as well.

I asked Nicole to tell me why she wrote the letter she said, “Because I wanted to speak up to them and told them how I felt”

I then asked her how she felt: “I felt like I was stuck in a cage and I couldn't get out for a long time.”

Finally I asked her what happened after she wrote the letter-- “I felt like I could stand up for anything.”

As a mom, I could not be more proud of my girl.  She stood up for herself and spoke up for what she felt.  I hope that by sharing her story others can know that they can also stand up for themselves!

Letter’s from her friends:

The first is one that I thought really summed up the idea:

“Dear Nicole,

You are so welcome! I hope that you feel better. Do you want to read to someone partners together if we are both at read to someone? If so then thank you if we are not together at the same center then maybe next time we can be together.  You are the best girl I have ever met! If you have food allergies who cares you are no different than anyone else! You are the best!”

This is one that Nicole loved:

“Dear Nicole

I’m really sorry that about that horrible game people played behind your back. I hope that I wasn’t one of those people that did that to you  and if I was I’m super duper sorry and the only reason I would of done that is to be like everybody else.  I also know that its not your fault that you can only eat certain stuff and by the way I almost cried when (teacher) read what you wrote in the letter I felt so so so bad I can’t even imagine how hard some days can be for you. From your friend”

Nichole with her family 

*     *     *     *     *

Written and shared by Katrina Pelters, mother to Nichole.  To follow Nicole's story, you can read more here:  http://nicolestrials.wordpress.com/ This site is not owned and operated by The FPIES Foundation-- this link is being provided for supportive and awareness purposes. Please read our link policy here: http://fpiesfoundation.org/about-us-link-policy/

This post was written by the Executive Board of The FPIES Foundation 

FPIES Awareness cards!

With the help of this caring community of families living with Food Protein Induced Enterocolitis Syndrome, we have developed a set of new awareness cards for families living with FPIES, inspired by families.

The business card-sized awareness cards are great for providing simple explanations of FPIES for friends, family, babysitters and so forth. Keep them in your wallet, car, or taped to the fridge to promote awareness and understanding where needed!

This postcard-size FPIES awareness card is great for keeping in the diaper bag or a purse. It not only provides information in plain language about FPIES and how to identify a reaction, but also gives tips on ways others can help to keep children affected by FPIES safe. This is great to share at playgroups, with family or with caregivers!

Along with these newly developed cards, we continue to have the FPIES Awareness rack card, a great at-a-glance explanation about FPIES.   These and more printer-friendly awareness materials are available for downloading and printing (or save the photo and share it in your social media- Facebook, Twitter, Pinterest and more!) from our Raise Awareness page of the website.

We welcome requests or materials via e-mail or postal mail.  Simply contact us at: contact@thefpiesfoundation.org and we will be happy to send you an awareness packet! 

This post was written by the Executive Board of The FPIES Foundation 

Living with FPIES: Advocating for Your Child in School and Childcare Settings

Living with FPIES: Advocating for Your Child in School and Childcare Settings
Nichole L. Huff, Ph.D., CFLE

As a mom of a child with FPIES, one of the hardest decisions I ever made was entrusting someone else to care for my son, living with FPIES, for the first time. And, truthfully, for the second time and the third time… and every time that’s followed since. Because every time someone new cares for my son, I have to explain FPIES and everything it entails—the most important of which is what can happen if he’s exposed to a trigger. It’s a bit much to squeeze onto the “Known Allergies” line of standard childcare paperwork.

Needless to say, initially it was just easier to avoid outside childcare. If an FPIES reaction was going to happen, it was going to happen on my clock. Although this approach worked for a while, my “live-life-in-a-bubble” system wasn’t a practical, long-term solution for our family. We had to learn to manage FPIES, and as a dual-income family, this meant learning to advocate for our son in childcare and school settings.

I feel blessed to say that for over three years now, we’ve successfully navigated a full gamut of childcare options (ranging from family members, to babysitters, to Mother’s Morning Out, to church nurseries, to fulltime daycare, to fulltime preschool). Slowly I let go of my fear-driven need for control, and I began to trust others. Instead of being my son’s bodyguard, I learned to be his advocate.

Over the last three years, I’ve followed a few simple F.P.I.E.S. steps when advocating for my child in school and childcare settings:

1. Focus.

When communicating with childcare providers or educators, focus on the facts. The fact is: my child’s safety depends, in part, on the attention given to his food allergy. Every snack, lunch, sippy cup, birthday treat, holiday candy, or crumb on the floor must be monitored. Every time my son eats or drinks something that I didn’t provide, the nutritional label must be read. Text, call, or email me anytime there’s a question as to whether or not a food (or ingredient) is safe. My son’s caregivers must be focused on keeping my son safe too.

2. Plan.

You can never be over-prepared when your child has a food allergy. Always plan ahead. At home, I have any unsafe foods clearly labeled. I have a “safe shelf” where my sitters or son can easily identify quick snacks or meals. I pack a healthy, safe lunch and plenty of snack options each day for my son to take to school. (And in years past when my son ate school-provided meals or snacks, I coordinated with the school to ensure that they knew how to read food labels and identify FPIES-safe foods).  

3. Inform.

When childcare providers or educators initially learn of your child’s FPIES, don’t be alarmed if they’re a little nervous. After all, you’re entrusting them with a lot. Help them learn to take the necessary precautions without treating your child differently. To me, it’s important to inform my son’s teachers that he’s just a normal kid who learns the same, plays the same, and loves the same as everyone else. His diet is restricted, but he isn’t. In our case, he’s just a rough-and-tumble, happy, sweet, smart little boy who can’t have milk proteins.

4. Educate.

Educating yourself on FPIES isn’t enough. You have to share what you know to others. Educate those who teach or care for your child on the essentials of allergy safety. In the case of FPIES, most reactions are delayed, and many need to be treated with fluid or IV resuscitation. With the help of your child’s physician (or using resources like those available at http://fpiesfoundation.org/emergency-care/), create an action plan. Also, most people don’t know how to read a food label for allergens. Educating others on basic allergy awareness is a simple yet effective way to minimize your child’s risk of accidental ingestion. As my son has grown, I’ve also educated him on his allergy and taught him to question the safety of new foods when they’re introduced.

5. Support.

Anyone who cares for my son has my number on speed-dial. I ardently convey that I am available at any time, for any question, big or small. In order to build a thriving, trusting relationship with childcare providers or educators, it’s important that I fully support them in their efforts to care for my son. I ask what I can do to more easily facilitate the management of his FPIES. Sometimes this means providing all of my son’s foods, other times it means visiting the school’s stock room to read food labels. I volunteer to provide safe foods for class parties and I’ve written blurbs for the parent newsletter bringing awareness to my son’s FPIES and offering suggestions for safe treats. By fostering communication between teachers, administrators, and other parents, I help to support the network of people who keep my son safe while I’m away.

Nichole Langley Huff is an assistant professor and Extension Specialist at North Carolina State University. Dr. Huff has a Ph.D. in Family Sciences and a M.S. in Marriage and Family Therapy. She is a Certified Family Life Educator with the National Council on Family Relations. Her areas of research include child development, parent-child communication, and bio-psycho-social health. Dr. Huff also has a weekly parenting blog at http://soapboxmommy.com/