The Miracle of FPIES

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

Carrie and Echo

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.

 

Echo

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.

Love,

Echo, Carrie, and Lance

Carrie, Echo, 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. 

FPIES: Caring for the Caregiver

FPIES: Caring for the Caregiver

Nichole L. Huff, Ph.D., CFLE

                Recently I read an article by the Family CaregivingAlliance¹ on caregiver stress.  As an introduction to the topic, the author compared the need to reduce caregiver stress to the safety rules given just before takeoff on an airplane—the ones that instruct you to place your oxygen mask on first before trying to help a child or dependent in the event of an emergency.

                Although it was a simple analogy, I couldn’t help but connect its message to FPIES caregiving: We can’t help someone else survive unless we first take time to help ourselves.  I could fully relate.  As the parent of a child with FPIES, I can remember moments at the beginning of our journey where it felt like I was fighting to breathe.  Restless nights when my husband and I would forego sleep so that we could watch our son in the event of a life-threatening delayed reaction.  We spent much of our son’s infant and toddler years walking on eggshells—fearfully tiptoeing around life instead of living it.

At the time, I wouldn’t have considered my husband or me to be caregivers.  But as we approach Rare Diseases Day, of which FPIES makes the registry, I realize that’s exactly what FPIES parents are—we are caregivers.  We provide care for our children with FPIES so that they can lead healthy, safe, and thriving lives despite their special dietary needs. 

In the United States, a disease or disorder is defined as “rare” when it affects fewer than 200,000 Americans at any given time. ²  Sometimes being rare is a good thing—like when you have a special talent or skill that sets you apart.  Other times, however, being “rare” can make you feel alone, which adds to your caregiving stress.  When my son was first diagnosed with FPIES, I searched for other parents with whom to connect.  I so desperately wanted answers, hope, and to find someone who could relate to our situation.  Thankfully, organizations like the FPIES Foundation and online support groups for parents of children with FPIES have helped me to see that while FPIES is rare, we are not alone in our battle.

As social awareness increases for children with food allergies, so does research on the effects of allergy management on a family’s quality of life.  According to researchers, areas of family life affected by allergy management include family activities (e.g., restaurant meals, social activities, childcare, vacation), decisions regarding schooling, time needed for meal preparation, health and general safety concerns for the allergic child, and parental emotional issues (e.g., anxiety or depression directly related to managing the child’s allergy).³  To combat the ill-effects of caregiver stress, we need to be as mindful to care for ourselves as we are to care for our children with FPIES.

                To be an effective caregiver, don’t forget to put on your oxygen mask first.  While you strive to provide a safe, healthy, and loving environment for your child with FPIES, chances are you’re putting your physical, emotional, and social needs to the wayside.  A good rule of thumb?  Work towards balance in these areas.

  

Physical

• How are you caring for yourself physically?  Are you getting enough rest?  Are you making time to exercise?  Are you as worried about your diet as you are your child’s?  How do you relax?

• When you’re physically exhausted, you not only wear down your immune system, but your likelihood of developing depression or anxiety increases.  Examine your weekly routine and make sure you’re getting the sleep, nutrients, and downtime your body and mind need.  Find a gym that offers childcare.  Once a month schedule a spa treatment or a round of golf.  Stroll your kids around the neighborhood or a local park.  Examine your diet.  Is it balanced?  Rely on food for fuel, not for comfort.

Emotional

• Side effects of stress, including depression and anxiety, can wreak havoc on our emotional states.  If you find yourself short-tempered, easily irritated, or crying more often than usual—or if your emotions ever interfere with everyday tasks such as socializing or driving—then chances are, your stress-levels are too high.

• Depression and anxiety are real—and they can cripple our ability to function in everyday situations.  They result from chemical imbalances in the brain and body, often as a direct effect of stress.  If you’re concerned that you may be suffering from depression or anxiety, talk to a therapist or a physician about treatment options.  Seeking help isn’t a sign of weakness.  But rather, taking care of your emotional health is vital to your happiness and your ability to keep stress at bay.

Social

• Do you make time for fun?  (Or should I ask: Do you remember what fun is?)  Do you spend time with your friends apart from your kids?  Do you schedule play dates with other parents and children (or do you shy away from situations that may involve food)? Do you and you partner make time for each other?

• As a busy parent, spending time with other adults often falls off our radar.  Especially for parents of children with FPIES, who also have to worry about educating sitters, childcare providers, even family members, about safely caring for our children.  If you haven’t already, find trustworthy childcare.  Whether you build in a once-a-week coffee date, a monthly book club, a Zumba class, or a standing date night, make time to socialize with other adults. 

Remember, caring for yourself (the caregiver) is essential to your overall well-being.  The more balanced you are physically, emotionally, and socially, the better able you are to love and care for your child, and to tend to his or her rare FPIES needs.

  

References:

¹Family Caregiving Alliance. Taking Care of YOU: Self-Care for Family Caregivers. Available:

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=847

²Rare Diseases Day is February 28, 2014.  Learn more at: http://www.rarediseaseday.org 

³Cohen, B. L., Noone, S., Muñoz-Furlong, A., & Sicherer, S. H. (2004). Development of a questionnaire to measure quality of life in families with a child with food allergy. Journal of Allergy and Clinical Immunology, 114(5), 1159–1163.

As the parent of a son with FPIES, Dr. Nichole 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 (CFLE) 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 maintains a parenting blog at http://soapboxmommy.com/