Author: Kari Fischer

Meet Amber and Jax Mieras. Amber is the Pillar Chair for Family Support and is also the devoted mother to nine-year-old Jax, who has Down syndrome. We invite you to join us on their PFD journey and follow their compelling narrative describing the intricacies of Jax’s care. Read Amber’s introspective reflections and see the inspiring results of parent directed care.

AMBER & JAX

Chapter 1

I am the proud mother of two kids, Nayeli, 5, and Jax, a 9-year-old boy with Down syndrome and PFD. I found out while I was pregnant that Jax had Down syndrome but had no idea that eating struggles would end up becoming the biggest challenge we would ever face.

Jax had his first diagnosis of failure to thrive at just eight days old, and then again at 4 months of age. After four months of dream feeding, counting milliliters, watching the clock, and witnessing Jax’s struggles, we knew he needed more help to get nutrition. We consented to a nasogastric tube and fourteen months later, Jax got his gastrostomy tube. He could not eat what he needed by mouth alone.

Over the next nine years our family was on a mission. Our goal was not only to help Jax become more comfortable around food and mealtimes but also to better understand the root cause of his oral aversion and PFD. We were determined to find ways to support both him and our family through this challenging journey.

For several years, Jax had weekly feeding therapy at a nearby children’s hospital. We observed periods of progress followed by significant setbacks. Despite the therapists’ dedicated efforts to explore various strategies and approaches, nothing seemed to stick.

When Jax turned 5, we participated in an intensive outpatient feeding program, with little improvement. The following year, at the age of 6, we enrolled in an intensive inpatient feeding program, only to be discharged 24 hours later due to COVID.

For the next four years, we navigated our PFD journey the best we could. We transitioned to a new feeding therapist, continued to educate ourselves as best we could, adjusted medications and formulas, and continued to find ways to entice Jax to eat each day. It was exhausting not only for Jax, but for our entire family.

About six months ago, during a gastroenterology appointment, our doctor asked if we would be interested in trying the same outpatient program at the same hospital that had yielded limited results five years earlier. I was not expecting this. In fact, I had an evaluation scheduled in six weeks for the same inpatient feeding program we had been exited from during COVID. I realized we had a unique opportunity on our hands.

We had five years of growth, food exploration, development, and maturity on our side, while the hospital had five years of adjustments, learning, and experience on their side. I cancelled our inpatient feeding program evaluation and decided to give the outpatient program another try, but this time, I wanted to prepare myself for each step of the journey.

I reached out to friends, therapists, doctors, and various people at Feeding Matters to help us prepare for our program evaluation as well as our next steps. Their collective insight gave me a fortified view of how this experience could be different.

Follow the next chapter in Amber and Jax’s story by visiting our blog regularly. Updates to come!

A Deeper Look at the 2023 PFD Alliance Symposium with Feeding Matters Pillar Chairs:

Education Pillar Chair-Amy L. Delaney, PhD, CCC-SL

Question:
I love the ARFID vs PFD diagnoses infographic. I work with children with autism and struggle to articulate where they would fall diagnostically. Are autistic children with feeding struggles classified as having PFD or ARFID? And is it under medical domain or another domain? 

Answer: 
A child with autism would qualify for a diagnosis of PFD under the medical and psychosocial domains, the medical domain given the neurodevelopmental disorder and, psychosocial assuming there is restricted eating. The child may also qualify under the nutrition domain if the diet is limited and causing growth or nutrition deficiencies. The same child with nutrition and psychosocial dysfunction would qualify for ARFID but only if medical and feeding skill dysfunction have been ruled out. 

Family Support Pillar Chair-Amber Mieras 

Question:
What wins have you seen in insurance coverage for PFD? 

Answer: 
We have been very lucky with our insurance coverage for my son Jax; however, at times it has taken months of calling the insurance companies every few days, taking detailed notes, and educating and pleading with insurance representatives. They all wanted to help but lacked information regarding Jax and his specific needs.  In the last few years, our insurance company has assigned us a specific group or representative to create consistency and provide knowledge of our particular needs and circumstances. This has made a huge difference. I now feel like I have someone from the insurance company on my team who knows our story.  We have been able to get changed to a blended food formula for Jax’s feeds, we have been able to qualify for various feeding programs, and we have received consistent approval for feeding therapy over the years. 

Research Pillar Chair- Paula Rabaey Ph.D., MPH, OTR/L 

Question: 
How would professionals and families officially diagnose PFD or advocate for the PFD diagnosis if they live in a country where PFD is not part of the ICD? 

Answer: 
This is a very interesting and important question that does not have an easy answer!  I am going to answer from my experiences in low- and middle-income countries where there are either no or very few OTs or SLPs.  An important starting point is with physicians who work with children with disabilities.  It is important to remember that medical and rehabilitation professions in the international community may have different education than we have in the US or Europe, so it’s not a matter of ignoring the diagnosis, they just may have never heard of it OR they realize the child has many problems with eating and nutrition but do not know how to help.  The same for therapists-they hunger for this knowledge as it was not part of their education.  It starts with advocacy and awareness on a global level.  PFD needs to be recognized as a global health problem, not just a high-income country problem.  OT has a World Federation of Occupational therapy as does SLP, which may be a great starting point for awareness.  Bringing this to international conferences is also important.  

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