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. View Chapter 1 of their story here.
Chapter 2: How to prepare for your child’s evaluation and questions to ask.
While preparing for our evaluation, I reached out to other pediatric feeding disorder (PFD) families and individuals I’ve met through Feeding Matters for advice. I outlined the opportunity to return to treatment and asked, “What should I ask during my evaluation?” I was quite impressed with the feedback I received.Three major themes emerged from the questions posed: Theme 1: A call for a family-focused approach.
What are our family’s aspirations for Jax within this program? Honestly, I struggled with this question initially. Over the years, I’ve relied heavily on the guidance of medical professionals and other families. Our own family had never explicitly discussed what truly mattered to us. We determined that while a reduction in Jax’s gastronomy tube volumes would be great, our paramount goal was for Jax to develop a genuine enjoyment for food and the mealtime experience.
Consequently, one of my primary questions became, how can we help Jax develop a healthy relationship with food, addressing both his physical and psychological needs, as well as those of our family?”Theme 2: A call for evidence.
The next questions centered on evidence based practices. What does the long-term data of patients look like, not just at the time of program discharge, but weeks, months, and even years down the road? How does the program define success and how frequently is this success measured? How is this information communicated to parents?Theme 3: A call to recognize our child as a unique individual.
Finally, the focus shifted to Jax himself — his unique needs, challenges, and complex history with eating.How will you adjust your program if something isn’t working? How will you create a program that maximizes his chances for success? If his behaviors begin to impede his progress, how will you address this challenge? How do we address his relationship with food before focusing on his eating skill and volume?
I entered the evaluation terrified but prepared. I had meticulously recorded my questions in the medical notebook I took with me everywhere. I was blown away with the responses I received from the feeding therapy team.
I expected push back, I thought they might view me as “that mom” or tell me Jax’s case was too complicated. Instead, they acknowledged our journey. They acknowledged our hard work, how far he had come in 5 years, how ready he was for their program. They recognized his maturity, his improved skills, and his willingness to engage more, even if he still didn’t have a love for food. Before I could even start with my questions, they asked me, “What are your goals?” This made it obvious to me that this was going to be a different experience for us. Our team started this new journey by demonstrating their willingness to work with us and by demonstrating their desire to provide the best possible help for Jax.
Rather than making promises of high percentages of success, they showed flexibility and a commitment to reflect on each day and week while involving me as part of the team. They explained what they hoped to accomplish and how goals would be constantly adjusted. The team aimed to meet Jax where he was while challenging him without inducing stress.
I can’t explain the feeling I had leaving that evaluation. I felt empowered. I felt heard. I felt hopeful. These are things I hadn’t felt for a long time when it came to Jax’s feeding challenges. I knew this would be hard, but I also knew in the depths of my soul, that it was the right time and the right program. Jax was ready and so was I. We weren’t expecting miracles, just help and support, and we couldn’t wait to get started!
Find questions to ask providers when seeking treatment for a child with pediatric feeding disorder here.
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
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?
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
What wins have you seen in insurance coverage for PFD?
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
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?
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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