Friday, May 13, 2016

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.

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, Echo, and Lance 

Carrie is an author, recipe creator, food lover, and loves connecting people in her online community, 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. 

Monday, March 7, 2016

An Interview with "No Tube"

What can you tell me about NoTube Organization?
NoTube supports families with children with tube dependency, working with the "Graz model of tube weaning".

We help children who are "stuck" on a feeding tube in absence of a medical need for it. Although the children are able to eat from a physiological point of view, they show signs of oral aversion and food refusal. We help them overcome this obstacle and finally be able to eat orally and sustain their nutritional needs. Furthermore, we help all children with early eating behavior disorders, such as selective eating disorder, infantile anorexia...

Where are you located?

The LLC is located in Switzerland and Austria. We offer online options (so families from all over the world can reach us without the need of travelling long distances, which is a big advantage for medically fragile children) as well as onsite options in different countries all over Europe. Our EAT Campus will be open in April 2016, in Graz, Styria!

Who is on your team?

We have an interdisciplinary team consisting of:
·         Pediatricians (Marguerite Dunitz-Scheer and Prof Scheer have developed the Graz model of tube weaning, they have weaned thousands of children)
·         Psychotherapists,
·         Clinical Psychologists (Sabine and Karoline are also Dr in Medical Sciences and have published a lot on the themes of tube feeding and weaning)
·         Physiotherapist (Eva. who looks back on 25 years of working with children with eating disorders)
·         Music Therapist (Birgit, who is also a social pedagogue and is quite experienced in her work with special needs children) ,
·         Psychosocial counselor
·         Non-medical professionals (marketing, financial department, IT...)

What made you develop an organization for No Tubes?
Our program "Graz model of tube weaning" has been developed and evaluated in the University Children's Hospital of Graz. Due to the increased number of interested families from all over the world, we wanted to offer services in order to help all these families adequately. We are absolutely not against feeding tubes and know that they fulfill a life-sustaining function. But when it comes to the weaning phase, not many professionals are trained and interested, so many children stay stuck on a feeding tube in absence of medical needs for it. These are the children we want to help. As said, we also offer feeding therapy for children with other early eating disorders.

How do you offer help?

  1. Tube weaning via Netcoaching - treatment via as specialized online platform, standardized protocol of reducing tube feeds, daily contact to our experts including messages, video analysis, weight and intake evaluation. This helps children who are medically fragile as there is no need to travel; furthermore the family saves the whole travel costs and stays home in its familiar environment. Over 90% of all children participating can be weaned completely off their feeding tubes! There is no duration limit, we treat the child until it has reached his/her full potential.
  2. "Learn to eat" program - online coaching for children with all kinds of early eating disorders

  1. Eating Schools in our EAT Campus in Graz: 2 weeks intensive support onsite by our interdisciplinary team in addition to the Netcoaching!
  2. Play picnics: all over Europe, to get in touch with our philosophy and programs, our team members currently travel to different locations in France, Sweden, the Netherlands, Great Britain, Switzerland and are willing to come to other countries if wished.
  3. Home visits by our medical experts for children with tube dependency and early eating disorders in order to help the family’s onsite.

Can you give some examples of how you have helped?
We treat children with different underlying medical diagnoses: extreme prematurity or birth complications, heart defects, metabolic diseases, malformations or diseases of gastrointestinal tract, genetic syndromes, psychosomatic/psychiatric diseases, neurological diseases, oncological diseases, renal diseases... who suffer from tube dependency. Furthermore, we work with children with different kinds of eating disorders such as highly selective eating, infantile anorexia, eating disorders in children with autism...

Please have a look at our patient's testimonials: : 

How do you think your organization can help children living with FPIES and feeding tubes? Also, how can you help families looking to avoid the necessary placement of a tube?

Before tube placement, we could evaluate the current nutritional state and situation with the doctors onsite and give specialized advice and help with the decision about tube feeding and support children during the phase of tube feeding or to help optimize the nutrition in case a feeding tube can be avoided from a medical point of view. For children who got tube dependent we can help with weaning keeping the special situation of FPIES patients in mind.

This post is a written interview with NoTube and The FPIES Foundation Executive Directors.  

Sunday, February 14, 2016

Create a Conversation about FPIES for Rare Disease Day 2016!

On Feb. 29, 2016, Rare Diseases Day gives us the opportunity to raise our voices for FPIES in solidarity with all rare diagnoses.  The theme for this year is “Patient Voice”, recognizing the role that patients have in voicing their needs, driving change to improve the lives of those living with FPIES and their families.

A rare disease is defined asrare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000. (Rare Disease Day)  

As we honor this day, we encourage you to create a conversation about rare diseases:
  • Promote awareness by sharing awareness materials and talking to your family, friends, caregivers, healthcare providers, daycare, schools, and more about FPIES. 
  • Share your story with your local news and on our Inspiring Families page. 
  •           Participate in patient  surveys by signing up for the FPIES Global Patient Registry to be sure your child’s voice is part of FPIES research. 
  • Advocate for rare disease by teaching someone about FPIES or joining efforts with your state legislature. 

Need ideas for starting the conversation? We can help! Need materials to share?  We can help with that too! 

Still looking for more ways to get involved?  You can: 

Whether on-line or in person, arm yourself with the materials you need to start the conversation and continue to build awareness to this rare type of food allergy.  

Join us in making the voice of those living with a rare diagnosis, such as FPIES, heard!

Wanting to learn more information about rare disease statistics in general? Visit Global Genes or pages to get informed and download their RDD materials.

This post was written by the Executive Board with approval of the Medical Advisory Board of The FPIES Foundation.