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2020, What a Year!

Published by Jaclyn Pederson, Feeding Matters CEO on Dec 29, 2020

2020, what a year!

In 2019, we were proud to share with you the publication of our paper declaring PFD a stand-alone condition -a catalyst for large-scale change and this year we were proud to share a HUGE next step in the journey to bring validity to this condition.

In August, we received word that pediatric feeding disorder will have its own diagnostic code in an upcoming edition of the ICD-10 manual —– meaning that physicians will be able to formally diagnose PFD and children will officially have this on their medical record.

In 2020 alone, we have expanded our support and educational materials for families, hosted our elite international PFD conference that reached all 50 states and over 34 countries providing evidence-based education on PFD, and achieved significant advocacy milestones.

In order bring PFD to the forefront, we need to support our claims with evidence. Therefore, this year, we published our 2nd phase of research on our Infant and Child Feeding Questionnaire in the Journal of Pediatrics. This ground-breaking work opens the door for children to be screened for PFD so that we can prevent the long-term outcomes that occur when we don’t pay attention to this early enough.

Then, we were the catalyst to the research that showed that 1 in 37 children have PFD and even more significant – 1 in 3 to 5 children with a chronic disease has PFD.

We have also secured a formal proclamation naming December PFD Awareness Month from Arizona’s Governor Ducey and a few others states.

And lastly, we now know that PFD will be its own diagnosis which is the foundation that families need for better insurance coverage.

All of this happened this year, during a global pandemic. This is a moment to celebrate!

While it can feel odd to celebrate right now, it is so important to us to honor this success and all of the work from our entire community to achieve these efforts. We have momentum and we are not stopping.

We will be here after this pandemic.

This year’s accomplishments have a very personal meaning to all of our professionals and families.

We need you to continue this momentum with us. The time is now, to take your place at the table to help children with PFD by supporting Feeding Matters.

Please join us in creating a world in which children with PFD thrive. Your donation today directly supports the work we are doing to support families and professionals and to bring PFD to the forefront.

 

Join us in congratulating our Founder!

Published by Feeding Matters on Aug 18, 2020

Congratulations Shannon Goldwater
Founder and Emeritus Board Member

Since 2006, Shannon Goldwater has been a visionary leader, ardent supporter, and steadfast champion as Founder of Feeding Matters. Shannon’s story began in 2002 when her premature triplets required feeding tubes to survive and suffered every time they were fed. Her family’s harrowing experience fueled her determination to find comprehensive resources and support for her family and a relentless commitment to make sure feeding, something so fundamental to every child’s overall well-being and survival, will never be disregarded. Without a clear path, Shannon’s passion and ingenuity inspired Feeding Matters as a movement to fill an unmet need and create a world where all children with pediatric feeding disorder thrive.

During her 10 year tenure as Board Chair, Shannon’s dedication and vision resulted in significant progress in the field, including:

Shannon’s triplets are now thriving young adults, and she has seen Feeding Matters continue to cement itself as the world’s premier organization tackling pediatric feeding disorder. Over the past few years, she has been working with the Board to transition her visionary role and now we want to also cement Shannon’s proud legacy. The Feeding Matters Board of Directors and leadership is excited to name Shannon as our first Emeritus Board Member, a role that will see us continue to leverage her leadership and passion while also lighting the way for innovative new ideas.

Shannon says, “The best thing about founding an organization is not starting it, but rather seeing it thrive 20 and 30 years later and that is what I want more than anything because I know the best is yet to come.” This dedication is the reason Feeding Matters is at the forefront almost 15 years later.

“Shannon Goldwater’s unwavering commitment to Feeding Matters has proved truly invaluable to our success. From countless hours on storytelling and strategy to the innumerable resources we’ve been able to bring to our families because of her… Shannon has been the biggest supporter of our work and we are not only thankful, but excited for her to continue in this role.” -Rhonda Anderson, RN, DNSC(H) FAAN, FACHE, Board Chair.

Please join us in celebrating Shannon by:

  1. Learning. Take a few moments to learn more about Shannon’s story and some of Feeding Matters’ accomplishments over the years.
  2. Giving. Donate in honor of Shannon and her legacy.
  3. Sharing. Send us a picture, story, and/or words of encouragement to include in a book we are creating for her.

Economic Impact Report

Published by Feeding Matters on Aug 11, 2020

A single swallow requires the use of 26 muscles and 6 cranial nerves working in perfect harmony to move food and liquid through the body. When one or more pieces of the feeding puzzle are missing, out of order, or unclear, infants and children can have difficulty eating and drinking.

Children with pediatric feeding disorder (PFD) are more than fussy babies or picky eaters. For them, taking a single bite of food may be painful, frightening, or even impossible. As a result, they may severely limit their food choices or refuse food altogether, preventing them from getting the nutrition they need.

Applying the US Census Bureau’s 2017 population reports, early findings estimate that more than 2.3 million children under the age of 5 experience severe pediatric feeding disorder in the United States each year. Additional reports estimate that up to 25% of developmentally typical children and up to 80% of those with developmental disabilities have feeding problems.

Yet, there had been no studies to quantify the assorted costs, medical and otherwise, incurred by families navigating PFD. PFD is defined as impaired oral intake that is not age-appropriate, and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction.

Feeding Matters’ Economic Impact Study identifies the economic burden of PFD on families who have insurance. From medicines, supplies, and expert childcare to specialized education, travel to appointments, and lost time, managing PFD can come with significant economic costs to families. Furthermore, parents and caregivers – herein referred to as “caregivers” – may experience lost or decreased income due to time required for PFD care. This study describes those costs.

View the study.

Feeding Matters announces Chris Linn’s departure as President and CEO

Published by Feeding Matters on Feb 27, 2020

February 27, 2020

Chris Linn

It is with mixed emotions that the Feeding Matters Board of Directors announces Chris Linn’s departure as President and CEO. Since 2008, Chris has played a critical role in the development and success of Feeding Matters. We all will miss Chris but fully support her as she transitions to spending more time with her family as she and her husband guide their children as they navigate their adolescent years. During her tenure, Chris’s inspiring leadership and passionate service resulted in significant accomplishments, including:

  • Growing the organization from an Arizona start up to a reach of all 50 U.S. states and multiple countries.
  • Supporting the Founder’s vision by facilitating the process to have pediatric feeding disorder (PFD) declared as a stand-alone diagnosis in a peer-reviewed medical journal, a critical first step to ensure all children have an opportunity to thrive.
  • Collaborating with a multitude of partners from across the U.S. to advocate for a medical code for PFD with the Centers for Disease Control and Prevention. If successful, this will open opportunities for insurance reimbursement, allocating research dollars to create best practices, and much more to ensure families have access to care.
  • Implementing the Infant and Child Feeding Questionnaire that has provided an opportunity for earlier identification of PFD. The future goal is to have a version of the questionnaire available in all pediatric offices to screen for PFD.
  • Working with an incredible group of families, healthcare providers, insurance companies, government agencies, and others through Feeding Matters’ PFD Alliance to continue creating a system of care for infants and children with PFD.
  • Developing a phenomenal team of dedicated, passionate, and committed individuals who through Chris’s leadership have the expertise to continue the future growth of Feeding Matters.

We are conducting a search to find the new Feeding Matters President and CEO, and have selected an Interim CEO, Dan Lawler, who will work with Chris on a phased exit to ensure a smooth transition to a new leader. During this transition period, it is our priority to find the best individual to lead, while still maintaining a stable and effective organization.

We thank Chris for the 12 years of dedication, passion, enthusiasm, and inspiration she has provided Feeding Matters with over the past 12 years. She will be greatly missed by the staff, Board, PFD Alliance members, families, and partners alike. We look forward to supporting Chris as she transitions to being at home with her family.

As a mom to a child who struggled with PFD, Feeding Matters holds a very special place in Chris’s heart, and she looks forward to continuing to be an Ambassador for us. If you have any questions or concerns during this transition process, please do not hesitate to reach out to me directly at RMAConsulting2016@gmail.com.

Sincerely,
Rhonda M. Anderson, RN, DNSC(H), FAAN, FACHE
Chair, Board of Directors

View updated information here.

Feeding Matters Announces Interim CEO

Published by Feeding Matters on Jun 15, 2020

We are pleased to announce that the Board of Directors has selected Jaclyn Pederson as Interim Chief Executive Officer of Feeding Matters.Jaclyn, a member of the Feeding Matters team since 2013, is a visionary leader that has created a culture of innovation within our organization. She holds a Masters in Health Innovation and has been behind much of the success we’ve experienced to date.

As the former Vice President, Programs and Strategic Initiatives, Jaclyn has been instrumental in bringing pediatric feeding disorder (PFD) to the forefront as shown by some of her efforts:

  • Grew our family support program to meet families where they are in their journey.
  • Expanded the Pediatric Feeding Disorder Alliance to ensure collaboration with healthcare professionals, families, government agencies, associations, etc. to advance the system of care for PFD.
  • Facilitated the Infant and Child Feeding Questionnaire research efforts that will eventually lead to an evidence-based screening instrument.
  • Facilitated the development of the Education, Advocacy, and Research strategies for achieving system changes.
  • Grew our International Pediatric Feeding Disorder Conference from a local PFD conference to an International must-attend event that reaches all 50 states and over 30 countries.
  • Steered the changes that Feeding Matters made to meet the needs of our families and healthcare professionals during COVID-19.

Jaclyn remains steadfast in her commitment and her pledge to carrying out our vision of creating a world where all children with pediatric feeding disorder thrive. That opportunity to thrive is every child’s right and one that every family should be able to pursue. Yet, sadly, in light of recent tragic events, we are reminded that is not the reality of the world we live in. PFD does not discriminate and this issue can impact any family. We continue in our commitment to reflection, education, meaningful action, and long-term sustainable change so that equity, diversity, and inclusion become ingrained in our work to change the system of care for children with pediatric feeding disorder.

Jaclyn will continue to collaborate with the Board of Directors as they determine next steps for the permanent CEO position within the next 90 days. We look forward to keeping you apprised of our progress.

  • Rhonda Anderson, RN,
    DNSC(H), FAAN, FACHE
    Board Chair
  • Craig WillisGovernance and Search
    Committee Chair

PFD Alliance Information

Published by Cuyler Romeo on Feb 27, 2020

The PFD Alliance is an open access community of professionals, families and community partners driven to further advances in PFD by accelerating identification, igniting research, and promoting collaborative care.

PFD Alliance at-large members receive PFD Alliance quarterly updates and are invited to participate in Digital Ideations, Symposiums and Town Halls to contribute input for future Alliance actions. Members also may join committees, serve as leadership, complete volunteer projects or give time as they are able through several levels of participation.

Alliance participation levels include:

  • The Executive Council: Members who serve in positions of leadership which include: Family Advisory Chair, Medical Director, Pillar Chairs, and Committee Leads
  • Pillar Committee Members: Members who serve on the active committees of the Alliance
  • Volunteers: Alliance members who engage in specific volunteer actions such as completing special projects or executing events.
  • At-Large Members: These members are engaged in the Alliance through communication, surveys, and invitations to our twice-yearly virtual meetings.

To ensure all aspects of care are addressed, we have organized efforts to fall under one of the four pillars within the PFD Alliance: Education, Research, Advocacy, and Support.  Although each pillar focuses on a specific area, the goals of each are aligned.

EDUCATION PILLAR
Build a workforce of qualified professionals to evaluate and treat pediatric feeding disorder. We will do this by impacting education that will result in better care, improved health outcomes and enhanced early intervention.

  • Conference Committee
    • The conference committee works to determine an evidence-based conference agenda along with a featured lightning talk. During the year, the committee works to ensure that the planning of the conference goes well and educational opportunities are of the highest caliber for attendees
  • PFD Educational Initiatives Committee
    • The PFD Educational Initiatives committee works to understand the educational needs of our feeding community while considering provider and client needs. The Educational Initiative committee strives to develop a professional network for information dissemination while advancing the community’s understanding of PFD across the four domains.
  • Resources Committee
    • The resources committee works to determine what partnerships need to be built with existing groups to provide more information around pediatric feeding disorder and how Feeding Matters can be the conduit of information. The committee also works to maintain the usability of our website as we investigate areas of improvement.
ADVOCACY PILLAR
Grow a network of advocates, including respected clinicians, researchers, caregivers, educators, healthcare professionals, insurance providers and more to influence public policy and facilitate change to improve the lives of children with pediatric feeding disorder.
  • PFD Identity:
    • Partner with associations and other organizations to support the approval of the ICD
RESEARCH PILLAR
Ignite research to define evidence-based best practices that will lead to better care for infants and children with pediatric feeding disorder.
  • Small Grants Committee
    • The small grants committee assesses research needs, reviews applications, and grants dollars to researchers interested in moving the field of pediatric feeding disorder forward.
  • ICFQ Research Project
    • Research the ICFQ to determine if it can be a psychometrically sound screening tool for early identification
SUPPORT PILLAR
Empower families so that they are educated on PFD, equipped with resources, supported to advocate for their child, and to ensure their family receives the best care possible.
  • Family Advisory Council
    • The Family Advisory Council (FAC) advises Feeding Matters and the PFD Alliance on how to more effectively meet the needs of families navigating pediatric feeding disorder (PFD) – providing feedback on proposed policy, programs, initiatives, and strategic planning. FAC members have a wide variety of experiences with pediatric feeding disorder and represent the diversity of families impacted by PFD.
  • Power of Two parent coaching
    • Qualified family coaches who have first-hand experience with PFD are matched with families struggling to overcome the medical, emotional, financial, educational, and social issues often faced with PFD. Through shared experiences, Power of Two family coaches offer emotional support, compassion, resources, and guidance – reminding caregivers that they are not alone.
PFD Alliance Leadership, Committee members, and volunteers often participate in monthly calls, as well as leadership or committee specific actions which may include additional monthly meetings, Pillar Town Halls, Digital Ideation and Symposium participation. Most volunteer and leadership commitments require approximately 3-5 hours per month. 

Feeding Matters funds clinical tool research project

Published by Feeding Matters on Feb 14, 2020

Feeding Matters launched its small grants program in 2019 to support the growing need for research on Pediatric Feeding Disorder (PFD). The initiative was led by the Granting Research Committee as a part of Feeding Matters’ Pediatric Feeding Disorder Alliance. The committee’s goal was to advance the PFD field by granting funds to researchers who proposed studies that fill the gaps in PFD research. The committee is delighted to support researchers Paula Rabaey, Ph.D., OTR/L and Kate Barlow, OTD, OTR/L on their project. Their study seeks to address two specific research questions: (1) To what extent do current assessments by feeding clinicians address the four domains of PFD? (Medical, Nutritional, Feeding Skills, and Psychosocial Factors). (2) What are feeding clinicians’ perceptions of current assessment tools used in evaluation and treatment of PFD?

Researcher Bios

Paula Rabaey, Ph.D., is an Assistant Professor at St. Catherine University in St. Paul, MN.  She has 25+ years clinical experience in pediatric occupational therapy including early intervention and feeding, eating, and swallowing.  She is a feeding technical expert for SPOON Foundation (http://www.spoonfoundation.org/) and has developed curriculum to train caregivers in orphanages around the world in safely feeding children with disabilities. She recently presented in Tula, Russia on feeding strategies and at the 2nd Annual OT conference in Morocco on pediatric feeding in January 2020.

Kate Barlow, OTD is an Assistant Professor of occupational therapy at American International College and a feeding consultant for THOM early intervention. She is also the current ambassador for the CDC’s Learn the Signs. Act Early. Program for the state of Massachusetts. She has over 20 years of clinical practice and her area of expertise is feeding, eating and swallowing.

Background

The high incidence of pediatric feeding problems is well documented, with a prevalence as high as 25% in typically developing children, 70% in pre-mature children, 80% in children with developmental disabilities (Korth & Rendell, 2015), and over 90% in children with cerebral palsy (Ju Ko, et al., 2011). With the movement to classify the range of feeding problems in the pediatric population into a unifying term “Pediatric Feeding Disorder” (PFD), there is a need for standard guidelines to choose the most appropriate assessment tool(s) that aligns with the four domains of PFD including: medical, nutritional, feeding skills, and psychosocial factors (Goday, 2019). There are many available non-instrumental assessment tools for clinicians to use; however many of the commonly used assessments are site-specific evaluations and parent questionnaires, such as the Sensory Profile and the PediEat. An issue faced by clinicians, is that the objective standardized assessments that are valid and reliable are lacking in the area of pediatric feeding and swallowing (Barton, Bickell & Fucile, 2018; Heckathorn, Speyer, Taylor & Cordier, 2016; Speyer, Cordier, Parsons, Denman & Kim, 2018). A recent systematic review on the psychometric characteristics of 10 non-instrumental pediatric feeding and swallowing assessments found missing, incomplete or conflicting psychometric data for all reviewed (Speyer, Cordier, Parsons, Denman & Kim, 2018). These assessments also were very specific to only one aspect of feeding. Assessment and treatment of PFD is critical in all domains to ensure inter-disciplinary collaboration and positive outcomes for both child and family. The purpose of this study is to investigate assessments currently used by feeding clinicians out in the field, and categorize them by the four domains of PFD in order to better understand current assessment practices and to inform future evidence-based assessment and treatment of PFD.

Methodology

This study will use a mixed methods research design in which both quantitative and qualitative data will be collected via survey research and focus groups in two areas of the United States (Midwest and East coast). The quantitative survey will examine the extent that current feeding assessments fit within the four domains of PFD and the qualitative focus groups will examine clinicians’ perspectives of current assessment tools being used for pediatric feeding problems. Mixed methods research provides a way to approach knowledge from multiple viewpoints, perspectives, and research approaches that allow for greater depth and breadth of understanding the problem (Johnson, Onwuegbuzie, & Turner, 2007). Appropriate sample size will be calculated for the survey research portion, and a smaller sample size of clinicians will be used in the qualitative portion using focus groups. Data will be analyzed by the Co-PI’s using NVivo software, which allows for greater validity of the results. Focus groups will be recorded, transcribed, and analyzed according to grounded theory methodology. Final data analysis includes comparing and contrasting the two data sets in order answer the research questions.

References

Barton, C. Bickell, M., & Fucile, S. (2018). Pediatric oral motor feeding assessments: A systematic review. Physical & Occupational Therapy in Pediatrics, 38(2), 190-209. DOI: 10.1080/01942638.2017.1290734

Goday, P.S., Huh, S.Y., Silverman, A. Lukens, C.T., Dodrill, P., Cohen, S.S…..Phalen, J.A. (2019). Pediatric feeding disorder-consensus definition and conceptual framework. Journal of Pediatric Gastroenterology and Nutrition, 68(1), 124-129.

Heckathorn, D., Speyer, R., Taylor, J., & Cordier, R. (2016). Systematic review: Non-instrumental swallowing and feeding assessments in pediatrics. Dysphagia, 31, 1-23.

Johnson, R.B., Onwuegbuzie, A.J., & Turner, L.A. (2007). Toward a definition of mixed methods research. Journal of Mixed Methods Research, 1(2), 112-133.

Ju Ko, M., Kang, M., Ko, K., Ki, Chang, H., Kwon, J. (2011). Clinical usefulness of Schedule for Oral-Motor Assessment (SOMA) in children with dysphagia. Annals of Rehabilitation Medicine, 35, 477-484.

Korth, K. & Rendell, L. (2015). Feeding Intervention. In J. Case-Smith & J. Clifford O’Brien (Eds.). Occupational therapy for children and adolescents, (7th ed., 389-414). St. Louis, MI: Elseview Mosby.

Speyer, R., Cordier, R., Parsons, L., Denman, D., & Kim, J. (2018). Psychometric characteristics of non-instrumental swallowing and feeding assessments in pediatrics: A systematic review. Dysphagia, 33, 1-14. https://doi.org/10.1007/s/00455-017-9835-x

Food Is Sensory: Post-Event Blog

Published by Marsha Dunn Klein on Oct 23, 2019

Post-Event Blog

  • Is there a formal assessment that parents and healthcare professionals can use to help “grade the ask” for children who refuse to eat? Do you have any strategies you recommend?

First of all, I believe we need to be careful about the words we use.  I, personally, do not usually talk about children “refusing to eat”, and do not chart “refusal behaviors”, as such.  I chart other things.  I see the adult role as “offering” appropriate foods and children can eat them or not.  I do not describe children as “refusing”.  I describe them as communicating something to us and we, as their caring grownups, need to play detective and try hard to understand why they are not YET able to eat that food.  I think when a child is not taking the food we offer, there is a reason.  But, might we be asking too much?

In my new book, I talk about grading our ask.  There is not a formal grading the ask assessment, just guidelines.  Is the food or liquid safe (and does the child BELIEVE that?) Is the food the right developmental ask? (Is the child developmentally ready for that food, utensil, or eating skill?)  Is the food the right sensory ask? (Is the child YET comfortable with the look, smell, sound, texture or taste of that food?  Can we modify it so the sensory ask is smaller, more graded, and the child is more motivated to try it?) Is the food the right motor ask?  (Does the child have the safe and confident eating skills needed for the food offered?)  Is the food the right emotional ask?  Can we start where the child feels comfortable and successful and tiptoe from there? If the child has had scary or worrisome experiences with that or similar food or mealtimes in the past, are we pushing him right into LOTS OF WORRY with our ask?  Can we scale that back?   Are we expecting the right independence ask?  Are we requiring the child to eat when WE feed him, when he is perfectly capable of feeding himself?

We could chart refusal behaviors, but maybe “refusal” in that situation is the right response for that child from his perspective.  I actually believe I could get ANY child to “refuse” just by the way I presented a food.  I look at refusal as MY NEED TO ADAPT, (grade the ask) NOT the child’s need to comply with my demand.

  • How do you define a “successful” treatment for a child with a pediatric feeding disorder? Is there criteria you recommend?

Successful treatment for a child, in my opinion, requires the parent to be included as an active participant in the WHOLE process. We need to support families at the pace the child AND PARENT are comfortable. Just like I believe that if the child is “refusing” they are communicating some type of struggle to us, and WE MUST adapt, I also believe if a parent is not successful, then we, as supportive team members must try to understand why, meet the parent where they are at, where they are ready, and re-think how we are offer support.  Just like not all treatment strategies work for all children, not all home strategies work for all parents.  We adapt and partner with parents to determine next steps.

We think of success, not in number of bites or reducing the number of refusals, though that is one way to define progress.  Instead, we look at the development of life-long skills, such as demonstration of a positive tilt, opening the mouth to indicate readiness for the offered spoonful or nipple with the child pacing the meal rather than the adult. We look at the life-long skill of confidently learning new food trying skills.  We look at being able to eat with the family at a family meal.  We look at positive food interactions (being able to touch food and pass food, serve food, help in mealtime jobs).  We look at how many ways can the child feel celebrated around food and meals, (rather than feeling like he is disappointing his grownups every meal). Success can be the child bringing her own spoon to her mouth to feed herself rather than being fed by an adult.   Success is also helping the child feel better, take in the needed nourishment, learn the skills to confidently chew and swallow foods and liquid, and enjoy the sensations of eating, and enjoy the mealtime with others. Can it be a success if a child can happily come to the mealtime, enjoy the food offered, and be allowed to leave the table when full?

The webinar I did for Feeding Matters is about how Food is Sensory.  I outline lots of ways to look specifically at the look, smell, sound texture and taste of foods so we can carefully offer new foods in ways that dilute the worry and allow children to be active and joyful participants in the process.

  • What can parents and healthcare professionals do to create an environment that encourages positive mealtime experiences?

The first thing I like to do is help parents and professionals imagine THEY ARE THE CHILD who is struggling to eat.  Imagine how THEY themselves would like to be approached if THEY had a big mealtime worry, if they were worried about texture, or swallow safety, or if they felt badly when they ate, or if they could not manage the skill of eating.  I have always thought that putting myself in someone else’s shoes is a great starting place. (Check out the Grasshopper Story ).

The second thing I think about to encourage success is starting from a place of MEALTIME PEACE. When parents and children are totally stressed about mealtimes, it is hard to help either of them want to try anything new.  I ask parents, what would YOU need to do in YOUR house to achieve Mealtime Peace, a mealtime with no anger, crying, pushing, arguments, and no pressure?  Maybe the child needs rehearsals, to learn how and what others eat.  Maybe she needs food rehearsals where she gets to explore the food before well-meaning grown up puts it in her mouth.  Maybe the child needs to be offered new foods or textures in such tiny incremental sensory changes so that it is hard for her to notice (or worry ) about the change?  Maybe the child needs to eat comfortable foods at the meal and work on new food trying away from the meal, bringing the new food or skill to the table when comfortable? We aim for Mealtime Peace because when calm and comfortable, children are in more of a learning mindset rather than an escaping mindset. They can learn about family togetherness, manners and what to expect from a meal. They can trust at that place of Mealtime Peace that they will not be forced or pressured into trying new, that there will not be sensory surprises and that they are a celebrated part of the meal.

  • What tips do you have for families and healthcare professionals looking to introduce new foods to a child with a pediatric feeding disorder?

When introducing new foods, can we start with foods or liquids that the child enjoys or is currently successful with?  Success, comfort and enjoyment can be our starting place.

I like to offer rehearsals in trying new foods.  In a rehearsal, a child gets to see others eating and interacting with that food.  They get to see what we do with that food and how we eat it.  They get to explore the look, smell, sound, texture and taste of the food before it ends up in their mouth. No sensory surprises.   They get to help put it in their own mouth, or to their own lips when THEY are ready, when the rehearsal was motivating and they show interest or readiness.  Sensory exploration of the foods helps the child be ready for it. For example, smelling a food is a rehearsal or preview that gives the child an idea about the taste before it is put in her mouth. Touching the food can give the child the idea of the food texture, again, before it is on her tongue.  If you were worried about trying a new food, would you put a food in your mouth that you could not, would not even touch?  Having these sensory rehearsals can really help.

  • Considering the newly published consensus definition of PFD, which domain or factor do you feel most greatly influences the child’s relationship to food and the caregiver who feeds them?

In my experience, all the domains of PFD, medical, nutritional, feeding skills and psychosocial, influence the child’s relationship with foods and their caregiver. When a child struggles to eat for any reason, caregivers worry.  Infants and children communicate that their mealtimes are not working for them by not eating, not eating enough, struggling with the motor skills of eating and sensory aspects of foods and, often, pushing their caregiver away. These reactions influence their relationships with food and with those who lovingly want them to eat more or differently.

As parents and professionals try to understand the roadblocks to confident and enjoyable eating, the mealtime interactions can become a stressed communication. The medical aspects of PFD relate to how well the child feels, if they have the endurance and physical abilities to eat.  The nutritional aspects relate to the child’s ability to take in enough nutrition on their own to grow well.  The feeding skills including muscle, motor coordination and sensory aspects of food influence eating enjoyment and confidence.  And the psychosocial aspects of eating relate to the child’s interactions with caregivers and the mealtime. The meal becomes a constant dialogue where the child communicates her abilities and enjoyment and the caregivers listen and adapt to help make the mealtime successful and enjoyable. So, PFD is all of those domains. It is difficult to look at only one when helping children learn to enjoy foods and eat enough.

  • It seems that enjoyment of a mealtime is very individualized. What role might more protocol based approaches have in the treatment of PFD?

I think enjoyment, confidence and internal motivation are big goals in supporting children who struggle with eating.

I personally like the word, “guideline” rather than “protocol”.  I have almost five decades of experience with a more “guideline” approach that is responsive to the child’s reaction.  We offer.  The child is able to take that food, or not.  If yes, GREAT. If no, we adapt the presentation for success to grade our ask. Was the texture, the bite size, the wetness of the texture too much?  Can we adapt for success? When relying on protocols, or teaching protocols to parents, I have found that it can sometimes lead to stricter, less flexible and less individualized interpretations and approach.  I have listened to parents my whole career, and many tell me when they were sent home with a protocol, it did not feel natural and was harder for them to implement in the home.   We can all contribute.   I believe there are many, many ways to support children who struggle to eat and that parent find the approaches that work for them.

About Marsha

Marsha Dunn Klein OTR/L,MEd, FAOTA is a pediatric occupational therapist who has spent a career specializing in pediatric feeding challenges. She received her bachelor’s degree in occupational therapy from Sargent College of Boston University in 1971. She also received a master’s degree in education with emphasis on special education in 1975 from the University of Arizona. Marsha has co-authored PreFeeding Skills editions one and two and Mealtime Participation Guide and Homemade Blended Formula Handbook with Suzanne Evans Morris and Feeding and Nutrition for the Child with Special Needs with Tracy Delaney. Marsha’s new book Anxious Eaters, Anxious Mealtimes: Practical and Compassionate Strategies for Mealtime Peace serves as a great resource for parents and caregivers. She lives in Tucson, Arizona and travels to present locally, nationally and internationally on pediatric feeding issues.

If you haven’t had a chance to watch Marsha’s virtual workshop “Food is Sensory,” you are welcome to participate on demand. It will be available on demand through April, 2020.

Register Here

PFDA Quarterly Update

Published by Feeding Matters on Oct 10, 2019

Our Summer Town Halls are complete. We are pleased to report on pillar actions and committee achievements as we prepare for our digital ideation and symposium to be held in January 2020. The Education Pillar continues its efforts to understand the community’s educational needs and meet those demands with evidenced based education, resources and outreach.
    • A PowerPoint Presentation on PFD has been drafted and will be piloted with our university partners from all four domains as we work to educate upcoming practitioners on PFD.
    • The first completely virtual International Pediatric Feeding Disorder Conference agenda has been established and is now open for registration.
    • Our educational resources, including products, texts, articles, and handouts are under construction and expanding. Criteria for resource review and inclusion has been developed to ensure resources are relevant, evidenced based and aligned with our mission.
The Advocacy Pillar is working to fulfill its advocacy agenda while organizing a coalition to enhance services for children with pediatric feeding disorder.
    • A proposal has been finalized and submitted to the CDC advocating for PFD to be a standalone diagnosis.
    • Early intervention eligibility standards are under investigation as we build a better understanding of each state’s EI service model.
    • We have identified the need for a consensus on assessment and management of PFD. Resources continue to be gathered as we prepare for a formal consensus meeting.
The Research Pillar continues to develop a body of evidence which promotes early identification and funding support of PFD.
    • The prevalence study on PFD is complete and has been submitted for peer review.
    • The research blueprint has been finalized. View the Theory of Change to see what is next on the research agenda.
As the Pediatric Feeding Disorder Alliance continues its efforts through committee actions, we encourage you to get involved. Every contribution furthers our initiatives as we come together to care for our families impacted by PFD. https://www.feedingmatters.org/pfd-alliance/become-a-member/ Participate in the Alliance https://www.feedingmatters.org/pfd-alliance/advocacy/ Contribute knowledge https://www.feedingmatters.org/get-involved/volunteer/become-a-volunteer/ Leverage resources https://www.feedingmatters.org/resources-support/resource-library/ Support families https://www.feedingmatters.org/get-involved/give/

Introducing LACI: Learning Advanced through Collaborative Initiatives

Published by Feeding Matters on Sep 06, 2019

Feeding Matters’ newest program, the Professional Collaborative: LACI (Learning Advanced through Collaborative Initiatives), is a 6-month virtual learning experience for occupational therapists and speech-language pathologists in Maricopa County. Funded by the BHHS Legacy Foundation, LACI is designed to unite professionals, mentors and mentees, as they build critical thinking skills within the context of family-centered care for pediatric feeding disorder. Participants will engage in monthly learning activities, analyze complex cases as a team, and receive insight from families who have been impacted by PFD. Through clinician support, we aim to enhance participation in children with PFD. This program, developed to advance clinical competency in the assessment and management of PFD, has broader system-wide goals of reducing economic stress of prolonged medical dependency, promoting caregiver mental health, lowering the risk of child neglect and injury, ensuring access to high quality care, and decreasing overall costs through efficient service delivery. Additional benefits from the formation of LACI include:
  • Therapists will be able to utilize a local network for collaboration and expertise/advice.
  • Referrals to the proper healthcare provider will be made more accurately and effectively, thereby decreasing waitlists for medically fragile children.
  • Enhanced collaboration through a highly skilled cohort of medical professionals will enable enhanced care.
Qualified Participants The mentor panel will be representative of multiple disciplines to ensure a diverse and dynamic learning experience for all participants. A multi-disciplinary panel also ensures a wide breath of knowledge will be available to the mentees. Mentees will be chosen across different settings with a focus on recruitment from underrepresented areas such as rural communities and home health settings. Potential treatment settings include– community treatment centers, hospitals, schools, early intervention centers, etc.
  • Licensed OTR or SLP in good standing
  • Currently or previously employed in a pediatric setting
  • Strong commitment to professional growth and community partnering
  • Statement of commitment: minimum of 4 hours per month to be allocated to collaborative goals
Participation Expectations
  • Attend an in-person LACI launch meeting on October 22, 2019 and LACI conclusion meeting on April 21, 2020 from 4-6pm.
  • Attend monthly 1-2-hour virtual LACI meetings for the 6-month cohort period: meetings to be held November 2019-March 2020.
  • Engage in at least 2 hours of person-to-person collaboration or self-directed learning
  • Contribute related resources and insight on the curriculum topic monthly via the virtual platform
  • Complete feedback surveys as applicable
Occupational Therapists and Speech-Language Pathologists who serve children in Maricopa County, Arizona are welcome to apply.