Every family is unique and weaves an important piece in our overall understanding of FPIES as well as the impact– medical and non-medical– this rare diagnosis has on our families, children and professionals. As you read the story that follows, please remember that though your family’s story may differ in some ways, we as a community all strive to make each story heard in order to raise awareness to all points on the spectrum of this challenging condition. If you wish to share your story, please check out our inspiring families page and complete the form to submit your story. We want to thank the community for all that you do to support and empower one another day in and day out, no matter where our own family’s journey finds us. Remember that your greatest gift to each other and to our community can be your voice.
This post is adapted and shared with us from a blog post originally appearing on Our Stable Table Facebook page by Carrie Saum.
27 months ago, our world changed dramatically.
We discovered that our sweet son, who was just 8 months old at the time, had a rare condition called FPIES. At first, we didn’t understand what that meant. We knew that it was a food allergy syndrome. We knew there were foods that would make him sick. We knew he might or might not grow out of it. And in the back of our minds, we carried with us the knowledge that he there could be serious consequences from reaction complications.
As our knowledge grew, so did our fear. He vomited to the point of shock, twice. His blood pressure plummeted and he lost consciousness. We finally pulled all food (formula/breast milk being his sole nutrition) when he was diagnosed because he threw up every food we gave him, no matter what form, always in a 2-3 hour window, and nobody had answers about why he had this or how to fix it.
We still don’t know.
I dug into every piece of research available. I combed forums, Facebook pages, blogs, and medical journals. I spent HUNDREDS of hours pulling information and trying to formulate a plan to help heal my baby son. His doctor, who is a remarkable human and care provider, was at a loss. She only knew of the condition because of a friend, and admitted she knew very little about it and how to treat it. She supported our decisions, chimed in with information when she had it, and helped us brainstorm how to keep him healthy and growing and on target for reaching developmental milestones. No specialists in our area knew anything about FPIES, or how to treat it. When it came right down to it, we were on our own.
In public, we couldn’t let our son out of our sight. We couldn’t allow him to roam when food was around, which was always. We made everyone wash their hands and faces before touching and hugging our very reactive toddler. We became human helicopters and even so, our son still suffered. His skin erupted and oozed, his diapers filled with blood, his stomach emptied itself until there was nothing, not even bile. Food was a looming, thieving threat, when it should have been life-giving.
In addition to solid information and helpful research available to us, groups of families who also dealt with this disease rose up and reached out their arms. They welcomed us, a warrior tribe of virtual strangers, into their fold. They vented, cried, rejoiced, and helped us fight our way through the very hardest and darkest days. They offered advice, compiled their own research, encouraged me to follow my intuition to give my son an extended gut rest in hopes of healing enough to tolerate food.
These warrior parents told me how to start an elimination diet that helped me clear reactive foods from my breastmilk. They encouraged me when I wanted to quit, and offered empathy when I was up all night for a week with a sick, reactive baby.
Our little corner of the internet, Our Stable Table, came from all of that heartache. It came from the sleepless nights, a sick baby for which there was no real help, the 21 months of exclusive breastmilk pumping, the 12 months on a strict elimination diet,parents and caregivers who did not quit and would not let me quit, and the place where hope is completely buried beneath heartache and debilitating fear and numbing exhaustion.
It is a miracle that we did not break.
It is a miracle we are intact.
It is a miracle we are still surviving.
As any parent of a child with extra or special needs will tell you, FPIES is life-altering. It changes your world in profound ways you cannot understand until it happens to you. FPIES has robbed us of health, sleep, finances, emotional stability, and almost our marriage. But it has not taken our son. It has given us an army of families who understand and help. It has given us purpose and deep empathy. It has given us gratitude for every breath, every bite of food, and every single day we get to be on this earth.
In one breath, I say to you all, our son is a miracle, just as much as FPIES is our tribulation.
Our babies are miracles. Our ability to continue fighting for them is a miracle. And we never, ever get to forget that.Even though we are drenched in vomit, we are covered in strength. FPIES will not win, it will be our greatest teacher of perseverance, hope, wit, and tenacity as parents and families.
This is what FPIES awareness looks like. Vomit and miracles. Hope and community. You, dear families with children with extra and special needs, are ALWAYS welcome at our table.
Echo, Carrie, and Lance
Carrie is an author, recipe creator, food lover, and loves connecting people in her online community,www.ourstabletable.com. With a great sense of humor, warmth, and vulnerability, Carrie brings genuine reality to the Internet, along with tasty food and slightly inappropriate jokes. After receiving her paramedic medical training, Carrie spent a decade abroad and in the U.S. in the non-profit medical sector, before venturing into the world of Ayurveda and integrated health in 2011. Carrie uses her skills mostly for good these days while caring for her son with extra needs and helping clients from all over the world meet their health goals. She loves spending time around the table with her family and friends. She lives in Portland, Oregon.