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.
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.
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
Aveanna Healthcare Medical Solutions
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.
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.
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!
- Grocery store delivery/pick-up service: 11 Stores That Have Grocery Delivery and Pick up
- Special order via local grocery stores
- Ask friends & neighbors to watch for hard to find items
- Social Media apps (Nextdoor, etc.) to solicit community help in locating hard to find items
- Food banks (foodpantries.org)
- USDA programs
- Food box delivery services with food allergy friendly options
- Food box delivery services for caretakers without allergies
Feeding Matters is committed to providing up-to-date telepractice logistics, technology, delivery, and overall experience resources. The links below will provide you with more information about organizations supporting the move to increased telepractice. You can also visit the Feeding Matters Resource Library to find handout and templates related to telepractice. There is also the opportunity for you to submit any resources that may be helpful to those accessing our website.
Organizations Supporting Telepractice
- Family and Community Resources
- Laws & Regulation Resources
- National Organization Links for Telepractice
- Practice Management
- Telepractice in Assessment & Management
Handouts and Templates
Please visit the Resource Directory for the following resources:
- Billing Guide for Telehealth Encounters
- Email template for First Telehealth Session
- Home Feeding Therapy Kit
- Home OT Kit
- Platform Options
- Preparing for Successful Teletherapy
- Use of Video Conference for Telepractice – A Resource Summary
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.
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.
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
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
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.
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?
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.
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.
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.
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