Inspiring Families
This page is dedicated to sharing stories of the journey of our FPIES families. Sharing both our trials and successes gives a voice to all those struggling with this invisible diagnosis, and is a valuable tool for other families as well. This is a unique opportunity for families to learn from one another and continue to grow together as a supportive community. Share your story or update your story here!
“Our lives are blessed with amazing people and just know that their kindness and warmth actually helped me cope and gave me strength when I was running low on fuel and was in despair.”
“While I’m fighting and advocating for my family, I know other families out there fighting with this specific issue as well. I’m more than happy to share my experience globally if it would be helpful. But change is needed to make this process easier for families to navigate.”
“Brennan is now a ridiculously healthy and hearty ten year old that doesn’t remember a thing about his early trials but enjoys hearing stories.
He plays football and is active in kickboxing. He eats everything.“
“He looked at Abel’s chart and told us he had FPIES.
I had no idea what this was; but now I had answers …. He’s my fighter and we will get through this one day at a time.”
“Staying positive and creating an environment that works is highly significant in our routine.”
“The biggest takeaway we had from this journey with him is how much it actually improved our lives. My son is independent and very aware of food, nutrition and health.”
“. . . That can be the hardest part at times – the unknown. Then you begin your new adventure in trying to figure out the best way to go forward.”
“She is able to deal with her FPIES, knows what her triggers are, and is finally gaining and maintaining a healthy body weight that her pediatrician is happy with.”
“FPIES is rare and often scary but certainly not something we can’t overcome. Knowledge is the best defense in something like FPIES, which is my purpose for sharing this story with you.”
“Through this adventure we have grown as a family. We have leaned on each other, our family, our friends, and most importantly God. . . We focus on the dimples, the smiles, the giggles, the chubby thighs, and the love that surrounds us.”
“We are saving our children’s lives. We did not choose this disease, we do not like this disease, we do not want this disease. This disease chose us.
We face it, we learn, we educate, we survive, we thrive.”
You Are Not Alone
“The new allergist asking if anyone has ever mentioned FPIES and provided information to read over until our next visit. I read the information and felt a sense of “This is it, FINALLY!” We knew what we were REALLY dealing with and all the dots connected!!!!”
“Through this incredible journey, I have been blessed to meet some incredible moms, and their amazing children, and it has been such a blessing to learn from them, talk to them about things no one else understands, and problem solve with them.”
“It may sound strange, but I can’t describe the relief I felt hearing she would have an “official” documented diagnosis!”
“The hardest part for us in this journey is that when you look at her she seems healthy now; but on the inside the food can make her hurt and she’s too young to be able to express those emotions in a way we can fully understand….”
“For any new parents, I want to say that I feel like this issue is much much harder in the beginning….There are so many places you could be on the FPIES spectrum and no one knows what they are in those first weeks…”
“He had dropped off of the charts at this point with no safe foods….Every food we tried became a big disappointment……The g-tube is amazing! It has saved my son’s life….
“After 6 days in the hospital, the best they could tell me was “it was some kind of food allergy”…. At his follow-up appointment with the gastroenterologist two weeks later, we first heard the term “FPIES”. I didn’t know enough about it to even know what questions to ask the doctor!”…
”But no one I talked to had heard of a baby being allergic to rice….I found thefpiesfoundation.org and read other families stories on there, Facebook, and a couple other websites. Everything that happened to these kids lined up with what had happened to my son down to the smallest detail….”
“Aside from the limited diet, B is your typical 17-month old! She has such a wonderful personality and is a little social butterfly! She loves her big brothers and wants to do whatever they are doing, including getting into trouble. Chronic illness or not, she is absolutely perfect. We have a strong, beautiful little fighter, who WILL conquer FPIES”
”The allergist immediately told me it was FPIES. He was a classic case. Everything my baby has been through and all of his specialists and endless appointments and the whole time it was a dairy allergy—that was a very emotional day for us. To have a real answer was an incredible burden lifted”
”The GI came back with words no parent should have to hear: Chase was failure to thrive. He was falling off the weight charts….but, with the help of our team of doctors, the support of other FPIES families, and the vigilance that is now the norm for my husband and I, he is healthy. FPIES has taught me to be a warrior mother”
”If I have two pieces of advice to offer you …ALWAYS LISTEN TO YOUR MOMMY GUT INSTINCTS … and… GET DIAGNOSED! Get a support team to help you! This is a long, hard, and weary battle!Our children are our hero’s! Their laughter is contagious! Their spirit is perseverance!”
“Friendship is born at that moment when one person says to another, “What? You too? I thought I was the only one!” ~ C.S. Lewis
“I have recently read stories of other kids that are have FPIES reactions to far more that just one food group like Catani, and I feel for them greatly. But I hope our story helps others like us know they are not alone”
“We felt relieved to have a doctor that knew about FPIES, and knew how to point us at the right direction! Despite his struggles, he is fighting this rare allergy! It has been a relief to finally get some support”
”When Carter was diagnosed, my husband and I felt so lost not having any answers or guidance, or absolutely anyone who had been through this before”
“I know how lucky I was to be able to have such outstanding doctors so close by, and hope that by passing on our experience, as mediated by their prescriptions and recommendations, that it helps give clarity to someone who does not have such access.”
“All my energy went in to trying to find a food that Matthew could eat. Where would we be without my FPIES Facebook family? They helped me choose Matthews next two foods. It’s still scary, and I still get that feeling in the pit of my stomach WAY too often, but I don’t feel in the dark when I’m choosing which foods to trial next. My goal is to get him through these next few years hitting as few triggers as possible, until FPIES is in our past”
”They call it a silent disease because FPIES children “look” healthy…She is going to learn to be an over comer and how to sympathize with others who face strong storms in their life. FPIES does bring storm after storm for the entire family. But, the other acronym that we will teach our angel is Finding God’s Power In Every Storm!”
”By then, knowing, something was very wrong, I started researching on the internet with his symptoms, and kept coming across FPIES. The more I read about it, the more I knew for sure, that this is what poor Evan has been dealing with all along, yet those around me still thought I was making up a diagnosis”
“Although FPIES has brought us many trials – with doctors, with acceptance, with understanding, with logistics, and, of course, with food, it has also brought us knowledge, faith, determination, patience, an incredible support system and a better appreciation of family, our health and the blessings we do have in our lives”
“Our family has become adamant about 2 things. Together we will survive FPIES, and we have resolved to make a positive difference for other FPIES families and the medical community. My hope is to share my knowledge, resources and experience so that other families do not have to live with this chronic illness feeling alone and powerless…”.
“Our quest, though not our path, has been simple– a constant uphill push towards normalcy…..a moment to see our child through non-FPIES eyes, a moment to see our child simply being a child in a child’s world.”
“Her reactions to everything from rice cereal to bananas included profuse vomiting, severe diarrhea, manic moods, fever, lethargy and an acidic diaper rash that never went away. At 9 months old, she was given the diagnosis of FPIES”
”More support is vital, more medical research is needed into this rare diagnosis so that other infants do not need to experience such complexities from this diagnosis. So that recognition of it is a reality in doctor’s offices”
“Thank you for the help you’ve been with this website, and the stories on here of each of your families. It helped me understand more about FPIES.”
~ Corrie B.
”The proudest moments are when Aubrey helps her sister by telling others to please wash their hands or ensuring that Riley is only given food sent by mommy or daddy….And Riley has been so brave and happy through all of her tests and appointments and has taught us so much about FPIES and food allergies– she is just a positive little person!”
”Was there really a Doctor who could look us in the eyes and empathize and understand all of the pain and suffering we had been begging other doctors to diagnose and help us with? FINALLY, WE HAD ANSWERS! I think everyone was surprised with how ELATED I was to hear him tell us she had a rare food allergy (what most people would think of as devastating news), but we were thrilled to have answers for our sweet baby”
“Twenty some days after her second birthday, we had a diagnosis. We left feeling thrilled, but confused. On the way home we read stories of others and we were blown away by how spot on her diagnosis was. Other people were experiencing what we had been dealing with for two years. Although it was rare, there was support”
“I’ve learned two main things along this FPIES journey. The first is that you don’t need to do this alone. I don’t know where I’d be without the support of the online FPIES community…..The other big lesson I’ve learned through all of this is that I need to trust my instincts….I don’t know if FPIES will always be a part of our everyday lives, but it will always be part of our story.”
”Always, always trust your parental instinct, especially when it comes to your child’s health. We were told too many times that this was just a virus or reflux, all while we knew in our heart-of-hearts that something else was at play. We will always be our son’s strongest advocates and proudest cheerleaders, no matter what the future holds”
“Searching online and googling her symptoms led me to suspect that it was FPIES, but it wasn’t until we were referred to an allergist that it was diagnosed as classic FPIES. We restricted oats and rice in her diet and had no further problems!….At 17 months, her daycare accidentally fed her rice and thankfully, there was no reaction. She appears to have outgrown it!”
”What a relief. To finally have the confirmation that I’m NOT crazy was overpowering- it was EMPOWERING”
“I Googled baby vomiting rice and oats and one of the first things that popped up was FPIES. . . Keeping people from feeding him is one of the hardest things I’ve ever had to do.”
“I truly believe he is on the mend, and every food pass is celebrated, and nothing is taken for granted anymore.”
“That’s when I realized that for the last 11 months, we had been roaming around in this maze with the completely wrong map. And then I met some other amazing moms who have dealt with FPIES and were able to help me start to create a little more of this map. I am forever grateful to them for all their help.”
”FPIES has profoundly affected our family. We have changed our diet, mostly for the better.
The FPIES community has been a tremendous support for our family. It has empowered me to work for change, so that the road for other families isn’t quite so long. I have learned how important it is just to be heard, supported, and understood”
“I kept thinking to myself, ‘I’m not a moron, I’m not going to keep giving my baby food when she’s going to become violently ill from it.’ Of course she’s not failing to thrive, she nurses constantly… I was actually scolded for not having food in her diet, despite telling him that we were simply terrified to feed her.”
The FPIES Foundation provides suggested links to other Web sites as a convenience to you. The Foundation encourages you to evaluate websites yourself and discuss the information you find with your health care provider(s). Use of our Web site constitutes acknowledgment and understanding by the user that within our Website there may be links to other Web sites that are operated by parties or individuals that are not affiliated with The FPIES Foundation. Read more on our link policy.
Spread FPIES awareness by sharing your family's story or reflections on life with FPIES on this digital health community.
NORD, the National Organization for Rare Disorders, offers a platform for families to share their stories and spread awareness.
Rare Diseases Day is February 28/29! Share your family's story on the Rare Diseases Day page to commemorate the day.
“Having him as part of the family has been an eye-opening experience, filled with extensive learning, research, and doctor visits. But organizations and websites, such as this one, have helped immensely, and I know that hearing of others going through similar trying times has helped me cope with Cayden’s issues”
~ Shannon Miskimen