Author: Gabi Lake

This project will focus on recruiting patient and family consortium members and leaders, training them on research fundamentals and the state of PFD research, establishing consortium governance, and then building consensus on a prioritized list of needed research for the field.

A team at Feeding Matters in partnership with University of North Carolina Wilmington has been approved for a $241,000 funding award through the Eugene Washington PCORI Engagement Awards (Engagement Awards) program, an initiative of the Patient-Centered Outcomes Research Institute (PCORI). The funds will support the launch of the Family Centered Pediatric Feeding Disorder (PFD) Research Consortium.

Jaclyn Pederson, MHI, CEO of Feeding Matters will co-lead the engagement project with Hayley Estrem, PhD, RN, Associate Professor at UNCW. Research on PFD is still considered an emerging field and while there has been great progress in recent years on the advancement of research, it still lacks the inclusion of the patient and family voice. PFD is impaired oral intake that is not age-appropriate and is associated with medical, nutritional, feeding skill, and/or psychosocial dysfunction. For these infants and children, every bite of food can be painful, scary, or impossible, potentially impeding nutrition, development, growth, and overall well-being. PFD is often a silent battle affecting more than 1 in 37 American children under the age of five annually. This prevalence surpasses that of well-known childhood conditions like cerebral palsy and autism.

This disorder places an extreme burden on parents/caregivers who must have specialized training in medical, therapeutic, and psychosocial interventions for every meal, often 5x a day or more. Despite this high level of involvement from families, they are often left behind in considering where the field of PFD is headed. Feeding Matters ensures that families always have a place at the table and aims to build a collaborative Research Consortium that will eventually be the field leader for the future of PFD research. Thanks to this new award, Feeding Matters will launch the Family-Centered PFD Research Consortium to be co-created and led by patients and families themselves. Specifically, the project will focus on recruiting patient and family consortium members and leaders, training them on research fundamentals and the state of PFD research, establishing consortium governance, and then building consensus on a prioritized list of needed research for the field.

The launch of the Family-Centered PFD Research Consortium is part of a portfolio of projects that PCORI has funded to help develop a community of patients and other stakeholders equipped to participate as partners in comparative clinical effectiveness research (CER) and disseminate PCORI-funded study results. PCORI is an independent, nonprofit organization authorized by Congress with a mission to fund patient-centered comparative clinical effectiveness research that provides patients, their caregivers and clinicians with the evidence-based information they need to make better informed health and health care decisions. Through the Engagement Award Program, PCORI is creating an expansive network of individuals, communities and organizations interested in and able to participate in, share, and use patient-centered CER.

According to Greg Martin, PCORI’s Chief of Engagement, Dissemination and Implementation, “This project was selected for Engagement Award funding because it will build a community equipped to participate as partners in CER and develop partnerships and infrastructure to disseminate PCORI-funded research results. We look forward to working with Feeding Matters throughout the course of their two-year project.”

“The core values that guide our organization: inclusivity, innovation, and collaboration are not just ideals; they are the bedrock of every initiative we undertake as we strive to advance the field of PFD. Our latest endeavor, the PCORI project, epitomizes this commitment and resonates deeply with me professionally and personally,” said Jaclyn Pederson, CEO of Feeding Matters. “At Feeding Matters, we recognize that traditional research paradigms often overlook the invaluable insights that families can provide, based on their lived experiences. The establishment of the Family-Centered PFD Research Consortium is a pivotal step forward, ensuring that our efforts are not only collaborative but also deeply rooted in respect and input from the experiences of those we aim to serve,” Pederson concluded.

Feeding Matters’ project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. For more information about PCORI’s funding to support engagement efforts, visit this link.

About Feeding Matters

For kids with pediatric feeding disorder (PFD), every bite of food can be painful, scary, or simply impossible to swallow, potentially impeding nutrition, development, growth, and overall well-being. Yet, there is no functional system of care for PFD locally, nationally, or internationally. That’s why Feeding Matters is dedicated to creating a world where children with pediatric feeding disorder will thrive. Established in 2006, Feeding Matters is the first organization in the world uniting the concerns of families with the field’s leading advocates, experts, and allied healthcare professionals to ignite unprecedented change to the system of care through advocacy, education, support, and research – including a stand-alone diagnosis, the International Pediatric Feeding Disorder Conference, and the Infant and Child Feeding Questionnaire. In 2022, Feeding Matters reached over 240,000 individuals in 50 states and 153 countries through their programs and website. To learn more about pediatric feeding disorder, visit feedingmatters.org or follow us on Facebook, Instagram and YouTube at @FeedingMatters.

Learn more about the Family-Centered PFD Research Consortium here.

What to expect before and after your child’s G-tube insertion

So, you’ve finally decided to get a G-tube for your child. Arriving at this point in your child’s feeding journey can be a relief. Others may feel some regret.

Either way, says Karen Ellis, mother of a 2.5-year-old who recently got a G-tube, getting one can make life a lot easier for children with pediatric feeding disorder (PFD) and their parents. After a minor procedure, a short recovery and months of stress-free feedings, Ellis and her family are confident they made the right decision for their son.

G-tube insertion, or gastrostomy tube insertion, is a medical procedure where a tube is placed through the abdominal wall and into the stomach. This allows caregivers to deliver nutrition and medications directly into a child’s stomach. Some kids with a G-tube use it to supplement oral feeding. Others exclusively eat and drink through the device.

Learn more about the benefits for kids with PFD of G-tubes in this blog: Does your child need a G-tube? Here’s what you need to know.

Ellis’s son, Ishan, gets most of his nutrition through the G-tube. He eats and drinks orally as well. Ellis offers insight into what parents can expect from the procedure and the few months after it.

What to expect before the procedure

Ishan had an NG tube for a longer period than typical, says Ellis. Running after an active toddler to replace the tube whenever it fell out was a constant struggle. Since birth, Ishan has struggled with eating due to gastrointestinal issues and silently aspirating. He was often sick, didn’t eat age-appropriate amounts and was slow to gain weight. His parents pushed Ishan’s providers to consider a G-tube, but they were told their son might grow out of his feeding issues.

At this stage of the PFD journey, Ellis says following your instinct as a parent is essential to advocating for your child’s needs. “They wanted to blow everything off as normal parenting or a simple therapy issue, but knowing as a parent that there continues to be something wrong means you have to keep pushing,” she says.

What gave Ellis clarity, she says, was knowing they were trying hard enough. “He was doing his best, we were doing our best, but still, something was not quite right.”

What to expect during the G-tube procedure and recovery

For Ellis, the hardest part of the G-tube procedure was knowing it was elective surgery that required hospitalization. By the time Ishan was scheduled for surgery, Ellis knew it was necessary, but she still felt they had made a choice. Ishan’s procedure and recovery both went smoothly.

Like most kids, Ishan spent one night in the hospital. Ellis says he did experience some pain that first and second day. Ishan received pain medication and lots of TLC. They held him the whole time at the hospital and watched his favorite programs.

By day three and four, Ishan was back to running around and doing his typical gymnastics flips. He returned to his normal toddler antics in less than a week. “Kids are resilient, but we tried to hold him back from too much activity right after surgery,” she says.

For two weeks, Ishan had to skip his baths and only have sponge baths. In general, swimming in the pool or ocean tends to be okay, but lakes and rivers can be problematic.

Watch the skin around the G-tube because that can start to look angry and red initially. You can learn more about feeding tube care using What You Need to Know Now: A Parent’s Introduction to Tube Feeding. This resource, also provided in Spanish, was provided by the Feeding Tube Awareness Foundation with permissions to share.

What to expect in the months after a G-tube procedure

Adjusting to G-tube feedings takes some trial and error for parents and kids. Even months later, G-tube feeding requires adjustments when a child is less hungry due to an illness or more hungry due to a growth spurt. In the beginning, says Ellis, it’s important to go low and go slow with feeds.

At first, Ishan hesitated to let anyone touch his stomach, so his parents made buttons for his favorite stuffed animals. They fashioned these themselves, but you can also buy them. Ellis showed Ishan how opening and closing the button doesn’t hurt. They spent a lot of time talking about the button and getting used to it before diving into feeding.

Ellis also spent some time getting used to feeding her son through the tube. Overfeeding can cause vomiting or an upset stomach. She keeps a towel in the car in case of any incidents. “It’s hard to guess how much a toddler wants to eat. It’s never a perfect science,” she says.

Ellis offers three tips for G-tube feeding

1. Find the formula your child tolerates best. Like baby formula, G-tube formulas come with different ingredients. The Ellis family found that the vegan formula has been better for Ishan than the milk formula.
2. Stay consistent with oral feeding when applicable. Ishan eats orally two times a day. They do this before tube feeding so that his stomach isn’t full.
3. Use a backpack. Cute feeding backpacks allow busy toddlers to run around independently during feeding sessions. Ellis tapes the tubing to the back of Ishan’s shirt or pants so it doesn’t come out while he’s running around.

These days, Ishan is happily playing and growing, and his parents are confident they made the right decision to get a G-tube. Ellis says it’s helpful to consider the G-tube feeding experience with PFD more like a marathon than a sprint. This can be harder for parents than kids, who tend to be more resilient. “As long as the kid is pretty happy and healthy, we’re the ones who are more stressed,” she says.

For more support in your G-tube or pediatric feeding disorder journey, check out our peer-to-peer mentoring program.

When your child needs feeding therapy for pediatric feeding disorder (PFD), navigating the system to access treatment can be challenging. If your pediatrician recommends feeding therapy, the following are some tips for how to find the right match.

Understand the role of feeding therapists

Feeding therapy requires additional training that neither pediatric speech and language pathologists (SLP) nor occupational therapists (OT) typically learn in graduate school. Look for a clinician who has obtained this additional training and has been mentored by another experienced feeding therapist.

Both SLPs and OTs can be qualified to provide feeding therapy. There are times when one discipline is better equipped to support your child than the other.

SLPs have extensive knowledge of swallowing, chewing and the oral motor part of feeding therapy. If your main concern for your child is choking or chewing, speech therapists are best equipped to help.

An OT is an expert in sensory issues and texture aversions. If the feeling of food in your child’s mouth, combining foods or picky eating are the issues, look for support from an OT.

Even in the initial feeding therapy evaluation, you might want to request one specialty over the other. If you’re unsure, let the intake team know your feeding concerns. They should be able to match you with the right therapist.

Check your insurance benefits

In many cases when a child needs feeding therapy, the referring physician will not indicate whether the therapist should be an SLP or an OT. In some cases, though, your insurance will specify coverage for one or the other. It’s a good idea to understand your benefits before requesting a therapy intake evaluation.

Set expectations from the start

To get the most out of feeding therapy, share your goals from the start. Even during the initial evaluation, it’s important that you and your child’s therapist have aligned goals. For example, if your child responds to a specific approach or personality, be sure to share that. In many cases, therapists can adjust to match your child’s needs. Part of the therapeutic use of self is learning to gauge and meet children where they are.

Feeding therapists have to be flexible. This means goals should be fluid from the start. If your child isn’t reaching their therapy goals, it’s time to adjust them. If your child has a setback, like a hospitalization, you may need to change your goals entirely.

Find out how to be a partner at home

As feeding therapists, we only have one hour a week to work with a child. That’s why we typically ask parents to join us during sessions so you can continue the therapy at home. As much as parents need breaks built into the schedule, therapy is not the ideal time.

Expect collaboration

From the start, feeding therapy is collaborative. During the initial evaluation, you’ll set goals and therapy expectations together with the therapist. You should also expect your therapist to work closely with any other clinicians who support your child.

Know that feeding therapy is not linear

Unlike the progress you might see in speech therapy, for example, feeding therapy tends to progress at a slower pace. Overall, you’ll want to see an upward trajectory of progress in feeding therapy, but it’s normal for your child to have ups and downs. What you don’t want to see is a plateau over time.

Don’t be surprised if it takes time to see progress in feeding therapy. Some kids are slow to build rapport and feel comfortable with a therapist. If your therapist is answering your questions, being collaborative and is confident in their approach, be patient.

Don’t be afraid to pivot if it’s not working out

If you’re not seeing positive progress over time or if your child’s feeding therapist isn’t a good fit, be sure to raise these concerns. In many cases, the feeding therapist can make improvements.

If results don’t improve, your child may need support from another therapist. Try switching therapists to see how your child responds. If that doesn’t help, your child may need support from another discipline entirely –– such as a gastroenterologist or a psychologist.

Consider the following questions and answers for a potential feeding therapist:

Q: How long have you been seeing and treating children with pediatric feeding disorder?
A: Look for someone with at least a few years of experience.

Q: Are you familiar with the Pediatric Feeding Disorder Consensus Definition and Conceptual Framework article published in the Journal of Pediatric Gastroenterology and Nutrition?
A: If not, look for someone willing to read the article.

Q: Do you have specific education and training regarding pediatric feeding disorder?
A: Look for someone who has additional training to understand the issues.

When therapists finish school, they usually don’t just jump into feeding therapy. Feeding is a specialty within speech therapy and occupational therapy that requires additional training and guidance under an experienced feeding therapist.

Q: Have you seen a child who’s had a similar experience?

A: Finding a therapist familiar with your child’s specific feeding challenges is important. Don’t be afraid to ask this specifically to be sure you’re comfortable with the answer.

Q: Describe your overall approach to pediatric feeding disorder.

A: Look for someone who understands the medical, nutrition, feeding skill and psychosocial domains and is willing to collaborate with a multidisciplinary team.

Q: How do you determine if a child is growing well?
A: Look for someone who follows your child’s growth pattern, not just a standard growth chart.

Q: How do you share the results of diagnostic testing, treatment goals, and other information with me and other providers treating my child?
A: Look for a practitioner who partners with professionals in other disciplines and keeps open lines of communication with them as well as with you. Make sure they are willing to provide you with copies of reports and take the time to go over reports with you.

The way pediatric feeding disorder (PFD) manifests in each child is as varied as the children themselves. But so many stories of parenting children with PFD are the same.

An infant struggles to feed and gain weight. Parents work tirelessly to feed their children and juggle medical visits. They search in the dark for a diagnosis of a complex problem they don’t understand, all while feeling alone and at fault.

Raising a child with PFD is a journey that rarely has a final destination. With the right support and care, it does get easier. This is the story of one mom of a son with PFD and how she’s gone from seeking help to supporting others.

One family’s journey with PFD

From the start, Erin Avilez’s son, Julian, struggled to breastfeed and gain weight. Her doctors were concerned about her baby’s measurements throughout her pregnancy. When her amniotic sac fluid was low, Avilez was induced at 37 weeks.

Julian was born at 5 pounds and right away had trouble sucking and taking in enough food at each feeding. Avilez switched to bottles, but Julian continued to undereat. “Within the first few months, there were already red flags that he was underweight and not getting enough nutrition,” she says.

Avilez and her husband started by switching formulas to see if Julian had some sensitivity to some ingredients. Still, they didn’t see much weight increase. Things got worse when her pediatrician sent Julian to a pediatric gastroenterologist. “That’s kind of where the horror of the story started,” she says.

Julian’s pediatrician and the GI weren’t communicating or working together and sometimes had different goals. “The GI’s only goal was for Julian to gain weight and cared less about how it affected his feeding,” says Avilez.

Julian got a nasogastric tube (NG tube) at three months old. The increase in calories made him vomit a lot, and he regularly pulled the tube out. Any time he pulled the tube out, Avilez would have to call her husband to come home from work so the two of them could force the tube back in. Insurance only covered a few tubes, making this devastating ritual even more difficult. Julian developed an oral aversion that he never had before and wouldn’t even let his parents touch his face. By seven months, Avilez insisted the NG tube be removed.

When Julian’s GI recommended a gastrostomy feeding tube (G-tube) instead, Avilez knew they needed a second opinion. Julian took some formula and solid foods orally, and Avilez thought they could build on that. A new GI at Phoenix Children’s Hospital agreed.

With a new pediatrician and GI, Julian’s doctors started working on finding a diagnosis. He was also able to join their intensive feeding therapy program. “The new GI doctor we saw listened, and he offered empathy and support,” says Avilez.

When Julian was 3.5, his family finally got a diagnosis of what caused his pediatric feeding disorder. A liquid and a food study showed that he has gastroparesis, a condition where the stomach muscles do not work properly to empty waste.

Now that Julian has a diagnosis, he’s able to take medication to help his gastric delayed emptying, as well as an appetite stimulant. He also drinks Ensure Clear to add more calories to his diet. Julian has an aversion to any formula or dairy because of his early experience with the NG tube.

In the past six months, Julian was finally registered low on the weight chart for the first time. “This is huge for him,” says Avilez.

Still, says Avilez, their struggle is never far from her mind. She dreads visits to the pediatrician when she knows Julian will be weighed. “Even today, a week before his appointments, I start getting stressed out because I know we have to get on the scale,” she says.

Finding support from other families with PFD

Julian was born during the pandemic, and Avilez left her job as a social worker to take care of him and to get to all his appointments. She suffered from postpartum depression and felt overwhelmed, alone and isolated.

“I knew there has to be some type of service out there to help moms like me,” she says.

Avilez searched online and found Feeding Matters. She requested a peer-to-peer mentor and was matched with another mom who shared her experience. That empathy was powerful. “She listened to me. The first time I got off the phone with her, I started crying that somebody understood what I was going through,” says Avilez.

Avilez’s mentor also told her she was doing a great job. “Throughout this process, nobody told me I was doing a good job, not the doctors or anyone on his care team,” she says.

Avilez’s introduction to Feeding Matters was the first time she learned about PFD. “I felt so validated that we weren’t the only ones concerned about not knowing what was going on with our son and not hearing about it from our doctor,” she says.

Today, Avilez is a peer mentor to other parents raising a child with PFD. She’s grateful to have support and to be able to pay it forward. Her hope is that more clinicians and hospitals will inform parents about PFD from the start. “I wish that when you have a child with feeding difficulties, someone from the start would offer resources,” she says.

Key takeaways for supporting your child with PFD

Avilez offers the following advice to parents raising a child with PFD.

1. Find a supportive care team: If the doctor’s not listening, find a more supportive provider. Having a good team in place makes all the difference.

2. Trust your instincts: It’s okay to get a second opinion and ask questions. Keep advocating for your child because you know your child best.

3. Find friends, family or a peer mentor: Find someone who will listen and understand so that you feel less alone.

Reporting on our findings from researching the landscape of pediatric feeding disorder treatment

Every day at Feeding Matters, we hear stories from families and professionals of progress and struggles, of success and setbacks, of those clinicians who helped and of those who faltered.

A zigzag line along an upward trajectory of progress is typical for families of children with pediatric feeding disorder (PFD). The journey is never simple, but it’s much easier with the right support.

Ensuring that more families get the right support from the start underpins every part of our work at Feeding Matters. Whether raising awareness, advocating for better insurance coverage or common terminology, our goal is always to help every family access the feeding care their child needs.

To get there, we need more research.

Building a body of research-based evidence on children’s needs and treatment options is what we can point to when we demand better insurance coverage. Data on education pathways is how we partner with national associations to improve clinical education on feeding as a specialty. And research is how we ensure every child gets the care they need at the right time.

That’s why I’m so excited about the November 2023 study we published in the journal Child: Care, Health and Development, an international, peer-reviewed journal for pediatrics covering children’s health and development. The study, Assessing the US treatment landscape for paediatric feeding disorder: A survey of multidisciplinary providers, documented the data on what options exist for patients with PFD.

None of the findings are shocking. All of it aligned with our expectations of what we hear from families and clinicians in the field. However, data means more than anecdotal experiences when it comes to understanding the landscape of PFD treatment.

Stories move people. But they don’t always move institutions. Data does.

Now that we’ve documented what treatment is happening in communities, we can build on that research with the ultimate goal of improving patient pathways and treatment outcomes.

The goal of assessing the treatment landscape for PFD

Most children with pediatric feeding disorder are treated in the communities where they live – often by occupational therapists (OTs) and speech and language pathologists (SLPs), often through early intervention (EI). Most research about PFD in the U.S. comes from pediatric psychologists working in a small number of institutions providing multidisciplinary treatment for PFD across the United States. Spots in these programs are limited, and waiting lists are long.

This leads to a disconnect between PFD research and the treatment that most PFD patients actually receive. What’s happening on the ground in communities is different from the treatment occurring in multidisciplinary centers –– and from what’s getting researched and published.

Aiming to ensure there is a common terminology and improving treatment through partnering, we knew we needed to start by defining the treatment landscape and building an evidence base. Our goal for the study was to determine the following:

1. Who is treating children with PFD

2. What are the treatment interventions

The methodology of assessing the PFD treatment landscape

To determine the landscape for PFD in the U.S. and identify provider and treatment delivery characteristics, we collected primary data through a web-based survey targeting providers from all four PFD domains –– medical, nutritional, feeding skill and/or psychosocial between January 2022 and March 2022.

In total, 815 clinicians completed the survey from January to March 2022. Only those practicing in the U.S. –– 83% –– were included in this study. Clinicians from every U.S. state were represented.

Survey respondents answered 71 questions regarding patient, provider and treatment characteristics.

As a follow-up to the survey, we conducted focus groups to better understand PFD treatment occurring in communities throughout the U.S.

What we found by researching the PFD treatment landscape

As expected, survey results showed that most PFD treatment occurs at the community level through EI or outpatient feeding therapy rather than in multidisciplinary programs. OTs and SLPs provide most of the feeding therapy through sensory and responsive feeding. These are not well defined treatment interventions or protocols so for the purpose of this study, we defined the two as follows:

Responsive feeding: Focuses on establishing positive feeding relationships and mealtime interactions which honor the child’s autonomy and need for intrinsic motivation to support developmentally appropriate feeding skills and nutritional intake.

Sensory feeding: Use of systematic play-based sensory interventions to promote feeding skills and dietary diversity through graded changes in food properties and presentation.

Tracking progress varies. Goal achievement, caregiver report and clinical judgment represented the most common tracking methods reported across all providers. Less common was the reported use of standardized outcome measures, clinic-specific measures or biospecimen labs.

The most frequent length of PFD treatment was 6–12 months (37.6%), followed by 6 months or less (32.2%).

Roadmap for next steps

What’s clear from this new study and anecdotal evidence is that the relatively new field of treating pediatric feeding disorder lacks best-practice guidelines for assessing and managing PFD or even the tools to help clinicians do so. The absence of guidelines makes the triage process and medical home management for pediatricians challenging as well. Gaining a better understanding of the community treatment landscape can help to identify clearly these practice gaps and inform future research on assessment and treatment.

Achieving our goal to get every child with PFD the care they need at the right time is a massive undertaking. To help us get there, below are our organization’s goals for the next 15 years:

1. Establish best practices for assessing and managing PFD.

2. Ensure all children are screened for PFD at well visits.

3. Ensure children with PFD qualify for early intervention.

4. Define a specialty pathway for accredited PFD specialists.

5. PFD qualifies for Early Intervention.

6. Secure more federal research dollars allocated to funding.

7. Inclusive insurance coverage.

All of these goals depend on building greater awareness about PFD. Making sure PFD becomes a household name would open doors to more research funding, better insurance coverage and improved care.

Researching the landscape of PFD treatment underscores just how much work there is to do to ensure children with PFD get the care they need. It’s also the first step in getting there.

**TW: Eating disorders. Author has been in recovery for 15 years, and is speaking to her story as someone who has overcome it.

The holiday season is meant to be joyful, hopeful, filled with generosity and love. In particular, I’m sure one core association to the holidays is gathering around a bountiful table with your loved ones. It’s special and something most of us look forward to, maybe even spend months planning in advance.

As a recovering anorexic, I can tell you that this cherished mealtime tradition can bring on some less-than-joyful experiences. While eating disorders are separate from pediatric feeding disorders, there are areas of overlap – primarily that of the psychosocial domain. That is what I will speak to here.

I have a vivid memory of Thanksgiving 2008, when I was just fifteen. My mom spent the whole day (as one does) in the kitchen, making a beautifully roasted turkey, rolls, green bean casserole, all the fixings. And, mashed potatoes – a food that I labeled as “too fatty,” one that I simply would not allow myself to indulge in.

I sat with my family at the dinner table, having the small amount of foods that I deemed as “safe” on my plate. Everyone was talking, laughing, enjoying – except for me. I spent the entire meal – actually, the entire day, and the day before, and the day before that – thinking about the food. How I’d make it through this meal without unraveling. I was so consumed with anxiety around a meal that was supposed to be exactly the opposite. In this way, I completely understand what children with pediatric feeding disorder (PFD) go through.

I share this to build up empathy and as a reminder to all that holiday mealtimes can be challenging. Here are some suggestions I have to help your loved one who struggles with eating to maybe make their holiday experience more joyful:

• Take pressure off the meal – Find/plan other ways for them to engage with the family without the food being the “main event”

• Allow for adaptations – For children with PFD, they may need to have alternative foods served to help them stay at the table

• Let them know they’re not alone – It can be easy to feel like you’re struggling in a way no one understands. You know your child best; find a way to connect with them and remind them on anxiety-filled days that you are there for them and see their struggle.

**These suggestions should not overrule the specifications of the child’s needs according to their doctors, nutritionists, professional supports.

May your holidays be happy, your bellies be full, and your hearts even fuller.

How one physical therapist uses the Infant and Child Feeding Questionnaire to identify a child’s areas of need and how she can help

Feeding challenges never occur in a vacuum. While I’m neither a speech therapist or a feeding therapist, the Infant and Child Feeding Questionnaire® (ICFQ©) from Feeding Matters remains one of my most important assessment tools in my initial encounters with new patients.

The ICFQ was authored in partnership with internationally renowned thought leaders representing multiple disciplines related to feeding. It’s an age-specific tool designed to identify potential feeding concerns and facilitate discussion with all members of the child’s healthcare team – including physical therapists (PT).

Based on the caregivers’ responses to six questions, the ICFQ has been shown to accurately identify and differentiate pediatric feeding disorder (PFD) from picky eating in children 0-4.

Using the feeding questionnaire as a physical therapist

Whenever I meet with a new PT pediatric patient at Texas Children’s Hospital, I spend the first session speaking to the family to determine how we can help the whole child.

For example, I recently was working with a family in the plagiocephaly – head-shaping – clinic at Texas Children’s. When I asked the parent about feeding, she responded that the baby just won’t stay still to eat. That response led me to ask more questions about feeding. I learned the baby has torticollis – tightness of neck muscle that causes the baby to turn to one side. Plus, the baby was dysregulated, which could mean a neurological issue. I asked about reflux, which could be a gastrointestinal issue. I knew how to help in some areas as a PT, and I knew to refer the family to an occupational therapist and a speech pathologist.

I can’t even describe how relieved this parent was. When it came to feeding, everyone else had simply told her to “keep trying.”

While physical therapy focuses on a child’s functional mobility, no movement’s isolated from the rest of a child’s health. Movement takes mental and physical regulation. An infant requires proper nutrition to perform at their highest level. A child without enough calories doesn’t have the necessary energy to make the most progress in physical therapy – or any other therapy, for that matter.

6 feeding questions that help me identify physical therapy patients’ needs

There are six basic questions on the ICFQ that clinicians identify when a child has a feeding issue. As a physical therapist, responses to the questions highlight issues around endurance, function level and the parent’s understanding of the child’s needs.

Following are the six questions and how the responses help me as a physical therapist.

1. Does your child let you know when he/she is hungry?

This question gives me insight into how well parents understand their child’s communication cues. Recognizing an infant’s or nonverbal child’s cues allows parents to know when a child is hungry, uncomfortable or tired. This communication is essential to the parent’s ability to do PT exercises at home.

2. Do you think your baby/child eats enough?

Often, the responses to this question are cultural. Among the patients I see at Texas Children’s, I find some cultures expect babies and children to eat more than others. This is an opportunity to educate parents about what is typical. For those babies and children not getting enough nutrition, it’s a chance to refer them to specialists who can help.

3. Do you have to do anything special to help your baby/child eat?

This question helps me gauge a baby’s stamina level. The baby may be having trouble coordinating breathing with swallowing. This tells me that in physical therapy, I need to work on the baby’s ability to open her chest out wide and back in. The goal is to increase the baby’s endurance to work for 30 minutes of exercise. That causes fatigue at the time, but it actually builds stamina for later.

A baby who doesn’t have the endurance to finish feeding isn’t likely to have the energy to make as much progress in physical therapy. This makes getting more calories into the baby especially relevant for PT.

4. Do you have to do anything special to help your baby/child eat?

This question helps me determine when a baby is dysregulated. It means I need to refer to a specialist who can help the family uncover why feeding isn’t typical.

In physical therapy, I’ll determine whether the child needs to work on muscle retraction. This is one of the issues I see often in infants, especially, and sometimes even older children who are having trouble feeding. Retraction takes them away from their midline without being able to find their center again easily. This makes it difficult to eat.

As a physical therapist, I’ll work with the baby on midline rotation. We work on coordinating the movement of opening and closing the arms and chest. The baby’s shoulders should expand back and then be able to come back to center. The baby should be able to find his flexion and make symmetrical motions in the upper and lower body.

Working on the body in this way can improve feeding, supporting the therapy that speech pathologists and occupational therapists are doing as well.

5. Does your baby/child let you know when he is full?

When a baby is not recognizing fullness, this indicates there might be a chronic condition. Once full, a baby should cry, turn the head, push away the breast or bottle or spit out milk. But if a baby just keeps eating, this is a cue that the family needs a referral to a specialist.

As a physical therapist, it helps me identify a baby’s level of function.

6. Based on the questions above, do you have concerns about your baby/child’s feeding?

Responses to this final question provide an opportunity for education. I’ll know how much information I should give parents on typical development for their child’s age and stage.

It’s also an opportunity to encourage parents who need a referral to go ahead and make that appointment.

As physical therapists, we’re not just looking at the legs and the feet. Treating our patients means treating the whole patient.

Knowing how a child is feeding doesn’t only alert me to a patient’s nutrition needs. It helps me identify other issues a child might be experiencing. Each question in the ICFQ paints a picture of the whole child’s needs.

Karen Crilly, PT, DPT, MAPT, CBIS, is an advanced clinical specialist at Texas Children’s Hospital who has dedicated her professional life to forming a strong background and expertise in the assessment and treatment of infants and children with chronic and complex developmental and/or neuro-motor impairment.