From the PFD Alliance: A Focus on Research

Published by Paula Rabaey Ph.D., MPH, OTR/L on Jan 06, 2023

Greetings from the research pillar chair! I have officially stepped into the Chair of the Feeding Matter’s Research Pillar as of this past summer and am so excited to contribute to building knowledge and understanding of PFD for families and professionals.

My first project is assisting Feeding Matters in building an evidence-based practice (EBP) landing page which will include 3 key features. There will be definitions and links to EBP resources for all professionals working with PFD and links for families to understand the ins and outs of using evidence to guide assessment and treatment of PFD. The page will also include tabs on how to use evidence to inform practice and guidance for standards of practice for assessment and treatment of PFD within the 4 domains.

Why the focus on evidence-based practice? According to Johns Hopkins Medicine (2022), the goal of EBP is “to incorporate the best available research, along with clinical experience and patient preference, into clinical practice, so healthcare practitioners can make informed patient-care decisions” (John Hopkins Medicine, 2022, para. 1). Integrating evidence-based practice can increase quality of care and successful client and family outcomes. Knowledge of evidence-based practice will also allow families and practitioners to advocate for interdisciplinary services best suited for their child’s needs.

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

On the Road with Feeding Matters

Published by Marissa Dotzler, MS, CCC-SLP on Dec 08, 2022

Feeding Matters is excited to start a new blog segment entitled “On the Road with Feeding Matters.” Pediatric feeding disorder (PFD) affects families all over the country and world. Feeding Matters hopes to end geographic isolation of information and experiences and create a global narrative of share experiences, best practices for care and innovation in the field.

Feeding Matters would like to introduce our very own volunteer and traveling feeding therapist, Marissa Dotzler!

1. Hello Marissa! We are so excited to be starting our “On the Road with Feeding Matters” segment with you at the helm. Tell us a bit about your background and why you chose to go into the feeding therapy world?
Hello Feeding Matters!! I began my education at the University of Delaware where I received my Bachelor of Science in Cognitive Science followed by my Masters in Communication Sciences and Disorders at Adelphi University. I started officially working as an SLP in 2018 after completing my clinical fellowship in 2017. After exposure to the field and all it encompasses, I was immediately drawn to the “feeding therapist” side of it all. There are so many choices and avenues for therapists to navigate and I think for me, finding one to hone in on was important.

It wasn’t always feeding. At first, I thought I would choose an alternative path because feeding therapy seemed scary in all transparency. I quickly learned it was quite the opposite, feeding therapy is dynamic, rewarding, and fun! It brings me so much joy to watch the children and families I work with grow and progress. A mantra I’ve recently been going by is “what are some things, within reason, I’d be excited to do? What are some things I’m afraid to do? What is a place I’d regret never seeing? What is a skill I’ve always wanted to learn?” I will talk about each of these as we continue our conversation as it relates to being a feeding therapist.

2. This idea of being a traveling feeding therapist is so interesting. What made you get involved and interested in this and where have you traveled thus far?
Thank you! I would place this under the “what are some things I am afraid to do” mantra question. Traveling and exploring new cities and places is something I’ve always enjoyed so when I took the time to research travel therapy and realize it united a career I love plus my love for travel. It was a no-brainer. Talking about the idea was a lot easier than making the idea a reality though. Leaving a long-term job in a city I lived in for five years was difficult. Knowing I would be leaving behind friends and families was also scary to embark on this solo journey. I took those fears and ran with them, always knowing they were a phone call away. The other reward is having the ability to connect with new colleagues and help more families than I could have ever imagined! I have been to Philadelphia and Houston, with San Francisco as my current stop!

3. Could you share with us what a normal day looks like for you at work (or if there isn’t a normal day what do you find yourself working on the most?)
It is difficult to narrow down a “typical” day when each day, setting, and environment is so different. Each day always starts with preparation for ongoing patients and new evaluations and ends with documenting the details. The in between is where all the fun happens. The day can range from conversations with colleagues for collaboration or learning new skills, supporting other disciplines, observing a session, and of course getting to play. Each day varies with its responsibilities and check lists, but no matter what, I always find the time with laugh with my clients and families. It is my favorite part of the day; those little moments where we laugh and remember despite whatever they are in the clinic/hospital for, there is this amazing, special, funny child in front of us who can brighten even the dullest moments of the day.

4. What is one of the topics you think you will discuss first?
I think right now a lot of families are still struggling with the ramifications of COVID and either delays or gaps in service. I think it would be relevant to discuss a current issue topic like this one.

5. We know that feeding is a universal idea, but have you seen any differences geographically speaking with your previous placements?
It’s hard to say, not having been to ~many~ places yet. However, I have noticed some areas of the country have a higher prevalence of one disorder over another… which is an interesting observation. More to come on this!

6. Did you learn about PFD or Feeding Matters first? And how did you become involved?
I learned about Feeding Matters first. I was working with another feeding therapist when I was first starting and she mentioned the PFD Conference hosted by Feeding Matters. I signed up that night! I remember being so in awe of the speakers and Feeding Matters Organization, it was such a wonderful event and I knew I had to get involved. I continued to learn and grow my knowledge about PFD through practice, mentorship, and continuing education. Eventually, I signed up to be a volunteer and after my first conversation with you, we landed here!

7. We are so excited to get started with this segment with you, Marissa. Stay tuned for our second blog from San Francisco!
Can’t wait – I am so grateful and excited to be here as a part of the Feeding Matters team!

Evidence Share: Findings and Clinical Implications for Thickening Formula

Published by Feeding Matters on Nov 18, 2022

Citation: Stevens M, Therapies Dof C, O’Rourke S, et al. Clinical focus: Findings and clinical implications for thickening formula with infant cereal using the International Dysphagia Diet Standardization Initiative Flow Test. ASHA Wire. Published December 17, 2021. Accessed September 6, 2022.

Summary: Neonates who present with dysphagia may require dietary modifications to improve swallowing safety. Thickening formula and breast milk is a common practice in pediatric hospitals as a management technique. However, the empirical information available to practitioners in guiding care and texture modifications for infants with dysphagia is limited. The International Dysphagia Diet Standardization Initiative (IDDSI) was founded as a means to provide objective measures for effective evaluation of dietary consistencies and provide common terminology to describe food textures and drink thickness. One large pediatric hospital set out to identify a common recipe to thicken formula with infant cereal. In the process, over 90 formulas were combined with rice and oatmeal cereals at increasing increments and systematically tested at IDDSI level 1 (thin/no cereal) to levels 2 (slightly thick) and 3 (mildly thick). Due to variability in formula and cereal formula combinations, no standard recipe could be determined. The intra- and interclinician variability was low, whereas the formulas themselves were highly variable across brand and form (e.g., ready to feed, concentrate, or powder). More research is needed; still, it can be concluded that following the IDDSI guidelines for flow testing may be more critical in carryover for families and staff than a common recipe.

Guidelines for NICU Discharge Preparation and Transition Planning

Published by Feeding Matters on Jun 17, 2022

The National Perinatal Association’s (NPA) interdisciplinary Guidelines for NICU Discharge Preparation and Transition Planning have been published! We appreciate the opportunity to have contributed to this open access adaptable and actionable work. Please download the complete publication and visit the NPA’s “NICU to Home” landing page for additional resources.

NPA Guidelines
NICU to Home

When to Choose an Amino Acid Formula

Published by Laura Dean, RDN, LD Pediatric Dietitian Norton Children’s Medical Group, Pulmonology on Apr 05, 2022

This blog post is sponsored by Reckitt/Mead Johnson Nutrition. 

Becoming a parent comes with lots of decisions and learning. One of those decisions is about how you will feed your baby. We have all heard that breast is best, and as a Registered Dietitian, I agree, but I also know that there are times when fed is best, and that can mean choosing formula. Choosing to provide baby formula can be a good decision for you and your baby but determining which formula can be overwhelming.

If you have ever walked down the infant formula aisle at the grocery, you know that there are many options. Infant formulas are designed with the right balance of nutrients to meet the needs of babies. Most formula is made specifically to be similar to breast milk, and if your baby is born full-term and does not need a more special formula, then a standard term formula will provide the nutrition they need. The difference comes when you need a more specialized formula.

There are three main types of infant formula; the most basic formula standard infant formula is a formula that is made from cow’s milk and is designed to be close to breast milk. Like breast milk, standard infant formulas are about 20 calories per ounce. Their protein is intact or whole, meaning your baby has to break down the protein as it is digested. These formulas are often well tolerated by most babies. If your baby is experiencing some mild digestive concerns, your pediatrician or dietitian may suggest a partially hydrolyzed formula.

Partially hydrolyzed formulas are formulas where the proteins are partly broken down and easier to digest. Babies with suspected cow’s milk allergy are often changed to a partially hydrolyzed formula, and those babies do very well. These formulas may also be used for babies who struggle with reflux or even constipation. These are 20 calories per ounce when made based on the package directions like standard formulas.

The third type of formula is an amino acid or elemental formula; these formulas are completely free of dairy and have very broken-down proteins. These formulas are specifically designed for babies with food allergies or who cannot tolerate other formulas due to medical reasons. Amino acid formulas may be used if a baby is not gaining weight well and needs something more broken down. These formulas are typically well-tolerated and provide the right balance of nutrients for babies to grow. When mixed according to package directions, they are 20 calories per ounce like breast milk.

There are several reasons to choose an amino acid formula. This should always be done under the supervision of a healthcare provider. We often think of using amino acid formulas for babies with a protein allergy; however, they may also be used for babies with other medical conditions who struggle with poor growth. We can also use amino acid formulas to improve tolerance when nothing else is working. Improved tolerance can include easier bowel movements, reduced spit-up or vomiting, reduced fussiness or gas, and can improve growth when babies are not growing well on other formulas. Because Amino acid formulas are so broken down, they are easy for babies to take in their nutrients, which is why we often see improved growth and development using these types of formula.

No matter how you choose to feed your baby, be confident in your decision and willing to learn about your baby and their specific needs. Talk to your pediatrician if you have any concerns about your baby’s feeding or growth.

Laura is an experienced Registered Dietitian with a demonstrated history of working in the hospital & health care industry. Skilled in Clinical Nutrition, Medical Nutrition Therapy, Pediatrics, Cardiology, Pulmonology, Gastroenterology, and General Nutrition. A strong healthcare services professional: Board Certified in Pediatric Nutrition with a Master of Arts focused in Family and Consumer Sciences/Human Sciences and a Bachelor of Science in Nutrition and Dietetics.

My child needs a Feeding Tube!? Going home with a feeding tube shouldn’t be rocket science!

Published by Melissa Anderson, RDN on May 01, 2021

Hearing your child needs a feeding tube is scary in itself. Realizing you’ll be expected to use this tube at home, without a medical professional, can be terrifying! With all the new skills to learn and instructions to remember it can be very overwhelming for a parent or caregiver. At first, the act of tube feeding a child can seem more complicated than it really is. Don’t get me wrong, there is a learning curve. However, once you learn how to safely use a feeding tube, it becomes easier the more you do it.

To start off on the right foot, it is important to have a good support system. This includes a helpful durable medical equipment (DME) company. As a dietitian for such a company, I have seen and helped countless families navigate the unfamiliar territory of learning how to operate a feeding pump. My job is to educate the patient and family regarding their feeding order, review what kind of equipment is needed and show them how to use it. I go over what to expect at home, possible complications and when to reach out for help.

I’ve had families ask me countless questions, families who have videoed me teaching them so they can reference it later, and some who have written pages of notes to help understand the process. There is no wrong way to learn! It’s a success if, after I’m finished, each person feels confident they can replicate the process at home. Nearly everyone I have met is a little nervous about the situation. That is a completely normal feeling.

We offer ongoing support throughout the whole process and that tends to help relieve some of the apprehension for most families. It’s important to find a DME company that has continual support like our 24-hour nurse help line, because more often then not, questions will come up once the family is home.

Tube feeding isn’t a one size fits all. There are so many different regimens and formulas as well as many different home life situations. I have not met two families that are alike. Each family has their own way of learning and that’s what makes my job so fun! There is no greater feeling for me than walking out of a patient’s room, knowing I made a difference in that family’s tube feeding journey.

Melissa Anderson, RDN
Clinical Liaison
Aveanna Healthcare Medical Solutions


Published by Feeding Matters on Mar 01, 2021

We are excited to share with you our volunteer Medical Director for the 2021-2022 term, Dr. Richard Noel. We also would like to ardently thank Dr. Jaime Phalen, our previous volunteer Medical Director who served in many capacities to advocate for children with PFD over the past few years and remains a close advisor.

Our Medical Director, and all of our PFD Alliance leadership is committed to creating a world in which children with PFD thrive. Additionally, they support Feeding Matters’ philosophy that: we believe families are an equal and valued member of the treatment team and should be respected in this way; we view PFD as a multi-facet challenge comprised of 4 domains; we recognize the need for evidence-based practices; and we believe all sectors are influential and multiple perspectives are necessary to create a functional system of care.

Our CEO, Jaclyn Pederson, recently sat down with Dr. Noel to learn more about his passion for children with PFD.

Tell our feeding community a little bit about yourself. How did you come to practice GI medicine? How did you get involved with Feeding Matters?
As all medical students, I was exposed to all medical and surgical fields and found pediatrics to be the most fun and rewarding. Once in a pediatric training, I found pediatric GI to be the most interesting and decided to pursue additional formal GI fellowship training. It was during this time in Cincinnati that I was initially exposed to pediatric feeding disorder and aerodigestive diseases, both within programs that were the legacy of Dr. Colin Rudolph.

Upon completion of my GI training, I moved to Milwaukee to work with Dr. Rudolph where I learned much more about pediatric feeding disorder from Dr. Rudolph and the active group of interdisciplinary colleagues he organized. I met Shannon Goldwater and Chris Linn and became formally involved with Feeding Matters in 2010, following the initial involvement of Dr. Rudolph and other colleagues with the nascent stages of what grew to be this amazing advocacy organization.

How do you see the PFD consensus definition changing care for our children with PFD?
Feeding problems in children are not new and many have attempted to define them, typically from a perspective that is limited to their own field. Apparently disparate terms like dysphagia, malnutrition, ARFID, infant anorexia, all probably refer to similar things, but are limited by the narrow scope of practice of those who generated them.

The 2019 consensus definition organized by Feeding Matters is the first truly multidisciplinary construct that recognizes the many elements that form pediatric feeding disorder. Furthermore, this consensus definition is written according to the International Classification of Functioning, Disability and Health (ICF), recognizing the disability that can accompany PFD, but has been poorly recognized in considering access to therapies and special accommodations by schools and other settings.

PFD is best managed by an interdisciplinary team where the family is primary. Based on your experience as a gastroenterologist, why do you feel a team-based approach is so important?
The nature of PFD is that relevant issues in a given patient may fall outside the scope of practice in a single discipline (i.e., a gastroenterologist may have expertise in issues relating to the upper GI tract of a child but does not have the same understanding regarding the mechanics of swallowing). It is by this necessity that team-based care is always best, whether in an interdisciplinary team at a large referral center, or a smaller group of specialists who work apart, but form a “virtual team” that can still address all relevant issues of a child with PFD.

What advice would you give the feeding community to help them access or provide optimal care for children with PFD?
Families of children with PFD need to be educated consumers who can push their providers to ensure all relevant needs are met. Do we need a referral to a psychologist? Do we need to enroll a dietitian who can help a feeding therapist broaden the choices of food with a given texture? Sometimes, it takes an educated family to push a provider to become better at managing a complex problem, such as PFD.

We have asked several questions about your connection to PFD. Please share something about yourself that we may find surprising, or we might not know.
I was born in Mexico City and Spanish was my first language. We moved to San Antonio, TX when I was 9 years old, and I always benefited from my family’s bicultural perspective on issues.

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.

ICFQ Rack Card

Published by Feeding Matters on Aug 07, 2020

Feeding Matters’ innovative Infant and Child Feeding Questionnaire® (ICFQ©) was authored in partnership with internationally renowned thought leaders representing multiple disciplines related to feeding. The ICFQ© is an age specific tool designed to identify potential feeding concerns and facilitate discussion with all members of the child’s healthcare team.

According to a seminal study published in the 2020 Journal of Pediatrics*, the ICFQ© has been shown to accurately identify and differentiate pediatric feeding disorder (PFD) from picky eating in children 0-4 years of age based on caregiver responses to 6 specific questions. This 6-question quick screener continues to undergo research as Feeding Matters strives to promote the early identification of PFD.

Download the ICFQ Rack Card to print and share with the families you serve!

Tips for finding specialized foods during COVID-19

Published by Feeding Matters Family Advisory Council on May 20, 2020

COVID-19 has brought many changes and challenges, and families with PFD face unique obstacles finding resources to navigate special food and healthcare needs.  Know that you are not alone in surmounting these obstacles.  We’ve spoken with some great parents in the PFD community and gathered their recommendations on resources and ideas that have helped them though these obstacles.