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A mother’s journey with PFD shines a light on research

Published by By Hayley Estrem, PhD, RN, Assistant professor at UNCW on Jul 21, 2023

I clearly remember the day a doctor’s news changed my life. After months of chasing my baby around with a bottle to eat an ounce at a time, I learned Alex has a rare chromosome disorder.

The neurologist enthusiastically delivered the devastating news, charmed that he was the first to solve the puzzle of why Alex’s development was delayed. Even as a registered nurse, I found his explanation confusing. My shock meant I couldn’t have processed the information even if it had been simple.

How NOT to support families with pediatric feeding disorder

Hayley holding Alex as a newborn, feeding him a bottle

As a healthcare professional, that day was one of many where I learned how not to support a family of children with pediatric feeding disorder (PFD). The news should have come from a genetic counselor, my husband should have been there, and it should have been shared with compassion.

The journey before learning about Alex’s disorder was a struggle as well. Although he was my first, I knew it wasn’t normal for a newborn to eat only an ounce at a time. What he took in, he spat up. His growth was slow, and at 9 months, he was neither sitting up nor crawling.

Our pediatrician told us to give it time, that I was a nervous new mom and that Alex was slow to grow because it was a difficult pregnancy, and he would catch-up. It wasn’t until we saw a different provider at 9 months that we were connected to a neurologist, geneticist and Early Intervention (EI) services. This too, was a lesson in how not to support families of children with PFD.

Armed with a diagnosis and therapy services, we hoped to help Alex eat more and get the calories he needed to grow and develop. Instead, we were told to try harder to feed him and to schedule weekly weigh-ins. A feeding tube was held over our heads like a threat, as if inserting one would signal our failure as parents.

Alex, Hayley's son, smiling as a baby

By the time Alex was 18 months and weighing only 16 pounds, I nearly begged for a G-tube. When he finally got one and started gaining weight, I couldn’t help but wonder why we were encouraged to try so hard. Why didn’t he have the nutrition he needed during such a critical developmental time?

Alex’s genetic diagnosis and the PFD that came with it became a springboard for my career. I had a choice to struggle with the question, “Why me?” or do something that would make this odyssey less painful for others.

I chose the latter.

Leading research to support families of children with PFD

After completing a master’s degree in nursing education and then a doctorate in nursing, today I research PFD and how it affects the entire family unit. I’m dedicated to fixing what we went through for others.

At the beginning of Alex’s diagnosis 15 years ago, there wasn’t common terminology among physicians and clinicians. This was a focus for my dissertation because it is a big barrier to building research and supporting families of children with PFD.

It’s why I have a big affinity for Feeding Matters, who did the work to get a PFD ICD-10 diagnosis.

Alex, Hayley's son, who is using a walker

One of the things I’ve done with our Feeding Flock Team is to develop several parent questionnaires about feeding behavior, skill, family management of feeding, and parent and family impact of feeding. For example, on a project with researchers and clinicians at Children’s Hospital of Atlanta, we are developing an assessment of the impact of intense food allergy regiments on caregivers and households.

Our goal is to provide data to clinicians and parents to help determine whether a food allergy intervention eases the psychosocial impact that food allergy has on everyday life for parents and families. For example, new oral immunotherapy treatments for food allergies require children to take a certain amount of allergenic food and have activity restrictions every day at a specific time. Is the cost-benefit worth it? Ultimately, the child still needs to avoid the food, but should have less severe reactions if exposed to small amounts unintentionally. Are there quality of life improvements for the family? We only know if we measure this.

I’ve interviewed parents as I go through the process of developing measurement tools for PFD, and I’ve heard their stories. Witnessing what others go through and being in the position to do something about it is what gives our family’s struggle meaning.

Because of our experience with feeding therapies, I learned to ask more questions. And I learned that research for PFD must be patient-centered. Only with patients who have experienced PFD and their families at the helm can research lead to better journeys and improved outcomes for the whole family.

blog author's family with her, her husband, and their three children

When ‘Expert’ Advice Is Unhelpful: A Guide to Avoiding Misleading Social Media Advice on PFD

Published by Feeding Matters on Jul 17, 2023

The pitfalls of unhelpful and misleading social media advice for clinicians and caregivers and how to avoid them

Whether you’re a clinician or a caregiver, unhelpful and inaccurate content is a common pitfall for anyone following feeding therapy accounts on social media. Here’s an example that speech therapist Bri Miluk, MS, MS, CCC-SLP, CLC, owner of Pediatric Feeding Therapy, sees often.

woman on phoneA therapist with a few years of experience shares a Reel highlighting the “dangers” of using a sippy cup. With a flashy video and a viral song, the account owner warns the audience of all the negative ways a sippy cup can affect speech, feeding, swallowing and sleep. Then, instead of sippy cups, the post recommends a special straw or open cup. The author shares a link to where you can buy it and the hashtag “#ad” as well.

Not only is the information, at best, misleading, and, at worst, entirely inaccurate, but it also violates Federal Trade Commision (FTC) rules for advertising.

Miluk, who is pursuing a PhD in communication and information sciences through the University of Alabama, explains, “This kind of content uses fear-mongering to convince people to avoid something based on baseless claims.” Pointing out that there’s no evidence to show that a child using a sippy cup is going to have sleep, airway, feeding or speech difficulties, she goes on to say, “A sippy cup uses similar oral motor patterns as sucking on a pacifier, thumb or bottle, but we know that frequency and duration matter. A child doesn’t have a sippy cup in their mouth all day long.”

Social media is a powerful tool for education and community among caregivers and clinicians alike. But the onus is on the user to ensure the information obtained there is accurate and helpful.

Healthcare misinformation mixed with fear-mongering on social media makes a recipe for disaster

Richard Noel, MD, a pediatric gastroenterologist at Duke Health, has treated hundreds of patients with pediatric feeding disorder (PFD) and other pediatric GI issues. One problem he hears from caregivers gathering PFD information from social media is that content typically features only one perspective. “On social media, you only see the numerator but never see the denominator. You’re not told about when an approach fails. They always generally talk about their successes.”

When information is shared as a general recommendation, it can be particularly challenging. “Pediatric feeding disorder can have many different forms and severities. What works for one person may not work for another,” says Dr. Noel.

Knowing that social media can be full of inaccurate information and even fear-mongering has led clinicians like Miluk to spend time creating social media educational content. Miluk has built up an audience of over 24K on Instagram with content to educate clinicians about feeding therapy. Caregivers also follow her for tips, and Miluk is especially driven to dispel myths for both audiences.

Here’s a great example of how Miluk does this:

https://www.instagram.com/p/CuQO6cCOd-S/

Clinicians need to gauge content on misleading social media advice

Even clinicians and students pursuing a therapy degree can fall prey to misinformation on social media. Miluk started sharing social media content, primarily on Instagram, after seeing other speech therapists promote inaccurate or misleading content. She started in 2020 by sharing evidence-based content on pediatric feeding. That evolved to trying to support clinicians and caregivers to better understand dark marketing and how misinformation is shared online. According to Business Review at Berkeley, dark marketing is highly targeted advertising that “causes the audience to think about the product more subtly.”

TikTok posts and Instagram Reels from influencers promoting a product take dark marketing to a new level. “Some of these sources are selling a method or a booklet, and you’re getting advertising disguised as a documentary,” warns Dr. Noel.

Because dark marketing is so pervasive on social media, Miluk teaches her students in university courses and clinicians online how to spot it.

“The better understanding we have of how to be informed consumers ultimately leads to better patient care,” she says.

Judging the accuracy of information on social media

visual description of what CRAAP stands for

When using social media to view healthcare information, one tool Miluk recommends considering is the aptly-named CRAAP test.

CRAAP stands for currency, relevancy, authority, accuracy and purpose. Miluk explains each letter of the acronym as follows:

Currency: Is the information timely or is it outdated?

Relevancy: Is the information relevant to you?

Authority: Who is the source of the information?

Accuracy: Is this information supported by scientific evidence?

Purpose: What is the reason this information exists? Is it to inform? Is it to sell? Is it to teach? Is it to entertain? Is it to persuade?

Best practices for clinicians using social media for pediatric feeding disorder information

Miluk and Dr. Noel recommend the following ways to access informative PFD content on social media without being misled.

Just because it’s a common refrain doesn’t make it gospel

One of Miluk’s favorite podcasts, Duped by Dr. Michelle Mazur and Maggie Patterson, has a quote she repeats often: Just because you hear something frequently doesn’t mean it’s true.

“Because of cognitive biases, when we see something repeatedly, it’s natural for our brains to believe it to be true. In reality, that doesn’t mean truthfulness,” says Miluk.

Make your intentions clear

For clinicians who promote products on social media, you need to disclose any affiliations in the post. This can’t be simply including #ad. You must clearly state that you may receive a commission on qualifying purchases. “It’s something that I wish would be normalized. An affiliation is not something to be embarrassed about. People have a right to know if you have a potential bias for something when you’re earning a profit, no matter how small,” says Miluk.

Clear disclosure on posts is required by social media channels themselves, as well as the Federal Trade Commission.

Unfollow toxic accounts

For those clinicians and caregivers who actively share on social media, one of the biggest challenges is the ability to hide behind a screen. This can create divisiveness and even be shame-inducing. “If you put something on a public forum, you should expect public replies and even public criticism, but that doesn’t mean we should be disrespectful,” Miluk says.

Miluk recommends treating your social media like your digital home. “If I wouldn’t allow someone to walk through my door and talk to me like that. Then they’re not welcome here, either.”

Advice for parents and caregivers

Caregivers should be wary of social media before adopting a new method or following advice to support children with PFD. Dr. Noel recommends the following tips:

Use your therapy provider as a sounding board

When you find new health information, bring it to your therapy provider before investing time or money into a specific method, book or video series. “You see something new on social media that looks amazing and promises to help 10 out of 10 kids with a feeding disorder. If you run it by your therapy provider, they might point out it’s not new. It works for some, but it doesn’t work for all. That’s how you get better, more realistic information for your child,” he says.

Seek information and support from advocacy organizations

Dr. Noel is a fan of and a critical professional leader for advocacy organizations like Feeding Matters. He says, as a physician, there are many questions he can’t answer because he doesn’t live with the disorder his patients’ families confront every day. Having a peer referral source is crucial. “These advocacy organizations are incredibly valuable to provide for patients’ needs that are way beyond what I do in medicine,” he says.

Technology today is moving faster than your finger can drag down to refresh. Access to this information overload is only as beneficial as the receiver’s level of skepticism. Miluk’s most important advice for using social media to find support for PFD or any other health issue is to slow down. “You have to slow down your thinking and be willing to appraise the information before feeding education on social media can be effective.”

Click here to read a blog by Miluk on why she recommends clinicians attend Feeding Matter’s annual PFD conference.

Thickening Breast Milk with Gelmix: New Guides and Handouts

Published by Gelmix on May 18, 2023

This blog post is part of a corporate partnership with Gelmix

We’re excited to announce new materials, recipes and guides for thickening breast milk with Gelmix Infant Thickener. Our goal with these materials is to improve caregiver education on thickening breast milk with Gelmix, to provide specific recipes and instructions for use, and to answer our most frequently asked questions about preparation.

First, we have a new demonstration video for thickening breast milk in the healthcare setting. Watch Lindsay M. Stevens, MA, CCC-SLP, Medical Facilities Manager for Parapharma Tech, demonstrate how to thicken breast milk. Lindsay discusses best practices for mixing breast milk in the healthcare setting and reviews recipes to achieve slightly thick, mildly thick, and moderately thick consistencies, including small volume recipes.

Additionally, download and print the new guide to Thickening Breast Milk In the Healthcare Setting which includes product information, mixing instructions and recipes for when thickening breast milk is recommended for swallowing difficulties, or for reducing spit-ups, in the healthcare setting.

Finally, we have two new printable patient handouts available. See Printable Guide to Thickening Breast Milk When Recommended for Reducing Spit-Ups and Printable Guide to Thickening Breast Milk When Recommended for Dysphagia for easy to print preparation guidelines for your patient’s specific thickening needs. These patient handouts are also available in Spanish, Guía Imprimible para Espesar Leche Materna Cuando se recomienda para Disfagia and Guía Imprimible para Espesar Leche Materna Cuando se recomienda para reducir el Reflujo.

Have questions or want to learn more? Visit our website to contact us, to request samples or to schedule a webinar in-service! 

4 things every pediatric occupational therapist should know

Published by Kate Barlow, OTD, OTR/L, IMH-E on Apr 25, 2023

In honor of occupational therapy month this April, a leader in addressing pediatric feeding disorder shares what OTs can do to improve care for children

feeding occupational therapist
Kate Barlow OTD, OTR/L, IMH-E

By Kate Barlow, OTD, OTR/L, IMH-E
Associate professor of OT at AIC

Early in my occupational therapy career, I worked with a girl who appeared to be in pain every time she ate. She couldn’t speak or communicate well, but it was clear to me that something was wrong.

After checking with her mom, I expressed my concerns to her pediatrician, who instructed me to continue offering milk. It was then that I encouraged the mother to find a developmental pediatrician.

Through evaluation and my conversation with the developmental pediatrician, the girl got a G-tube. She gained weight. Her whole demeanor changed once she was no longer uncomfortable. It was the first time I felt the power of advocating for one of my clients.

As occupational therapists, we always make the best estimates based on our experience and clinical observations.

This was an important lesson for me that I need to trust my gut and be there for my clients. If we as clinicians don’t push for those kids and families, they may not get the care they need.

I’ve been advocating for children with feeding issues ever since.

Feeding is among the main reasons kids are referred to an occupational therapist (OT). And yet, as an OT, I see that the work we do for kids’ feeding issues is an area that needs improvement. With more awareness, education and system-wide assessment tools, all children with feeding issues can access better care.

Universal screening for feeding issues would identify more children who need support earlier

Feeding issues in young children are so common that I believe all children should be screened for feeding concerns. Similarly to school-wide hearing and vision testing, feeding screening should occur in early childhood education centers and schools. We as OTs should advocate for universal screening for feeding issues.

Conservative evaluations estimate that PFD affects more than 1 in 37 children under the age of five in the United States each year. That rate is even higher for children with developmental delays.

A recent study indicates that feeding problems could indicate a developmental delay. Results showed that compared with children who never experienced feeding problems, children who experienced high feeding problems at one or two time points were more than twice as likely to have a delay on all Ages and Stages Questionnaire (ASQ) domains. Children who experienced high feeding problems at all three-time points were four or more times as likely to have a delay on all ASQ domains.

OTs and SLPs need a comprehensive screening tool

With the help of a Feeding Matters grant, Dr. Paula Rabaey and I completed a research study, “Investigation of Assessment Tools in the Area of Pediatric Feeding Evaluation: A Mixed Methods Study.” We surveyed 263 pediatric occupational therapists and 182 speech and language pathologists who identified as pediatric feeding therapists. Results showed that OTs and SLPs use various assessment tools. Non-standardized assessment tools were most commonly reported in assessing all four domains of pediatric feeding disorder: medical, nutrition, feeding skill, and psychosocial.

The results indicated a clear need for a standardized assessment tool covering all pediatric feeding disorder domains. The research will be published in the American Journal of Occupational Therapy this summer.

Clinicians need to continue constantly learning

Today’s occupational therapy programs include more pediatric feeding, eating, and swallowing education. In order for occupational therapists to stay up to date on pediatric feeding issues, all feeding therapists need to participate in continuing education courses.

The International PFD Conference from Feeding Matters is an excellent way to level up your pediatric feeding skills knowledge. The conference features the latest research and methods from leaders in the field and attracts clinicians of all levels of experience. The virtual conference is available live Thursday, April 13 through Friday, April 14, and then virtually until Wednesday, May 31.

feeding occupational therapists can benefit from attending the IPFDC

Feeding therapy needs to be culturally sensitive

We as clinicians do a great job of educating parents, and it is important to be culturally sensitive when working with families. I recently received the infant mental health endorsement – IMH-E – emphasizing the importance of culturally sensitive, relationship-focused practice.

It’s important to consider a family’s cultural norms, home life and income level when recommending what foods children should or shouldn’t eat and how they should approach mealtimes.

We need to ask open-ended questions to access information we might not have even considered and so that families don’t feel judged by any insinuations.

For parents, struggling to feed a child is extremely challenging. It’s our job as clinicians to do everything we can to make that a little easier.


Kate Barlow, OTD, OTR/L, IMH-E® is an associate professor at American International College. She’s also the current ambassador for the CDC’s Learn the Signs. Act Early. program for Massachusetts. She has over 20 years of clinical experience that includes public school practice, early intervention, a pediatric hospital-based outpatient clinic and management. Her areas of clinical expertise are early identification of delays and pediatric feeding.

The Power of Trauma Informed Care for Children with Pediatric Feeding Disorders

Published by Feeding Matters on Apr 05, 2023

Of all the clinical appointments for 15-year-old Maya Roberto over the years, one stands out. Instead of catatonically going through the motions of her echocardiogram, Maya interacted with her cardiologist, even asking questions. Her mother, Dr. Anka Roberto, recalls how shocked she and her doctor were as Maya actively engaged with her cardiologist for the first time.

Noting that his patient, who was five years old at the time, was much more lively, the physician asked what had changed. Roberto, DNP, MPH, APRN, PMHNP-BC told him, she was in trauma therapy and just had an Eye Movement Desensitization and Reprocessing (EMDR) session to help her work through her medical trauma.

The doctor had never heard of it, and was pleasantly surprised with its efficacy.

Today, Roberto uses EMDR to help heal her pediatric patients from trauma as a private practice clinician.

Roberto’s years as a NICU nurse and mother of a child with complex congenital heart defects prepared her for a career in trauma-informed care as an advanced practice nurse. She’s seen personally and professionally how much treating a patient’s trauma as part of the continuum of care can make a difference.

news article about Maya
Article featuring Maya after heart surgery

Since birth, Maya’s journey has included multiple open heart surgeries, years of feeding therapy and an NG tube. Roberto knows firsthand how traumatic medical and feeding interventions can have a lasting impact. For children with pediatric feeding disorder (PFD), considering and treating medical trauma can go a long way toward healing children.

Trauma-informed care offers a comprehensive approach that considers emotional and mental well-being to help children and their families affected by PFD. Understanding the impact of trauma on the body and how to navigate it allows families to access an effective care modality.

Defining trauma

Trauma varies for everyone. One major incident or many minor insults can cause trauma. Two people experiencing the same situation can respond entirely differently. One can move forward, while the other carries a lasting physical and emotional imprint. “When I think about trauma, it’s more of an adversity,” says Roberto. “We could have a big trauma, or we can have little things that add up to carry the same weight of a big trauma.”

What matters is how trauma affects the brain and body.

The CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) study is one of the most comprehensive investigations into the lasting effects of childhood trauma. The longitudinal study showed that early adversity could significantly impact future physical, social and emotional health – as well as lead to early mortality rates.

The pandemic further raised awareness of how trauma can affect mental and physical health.

How the body reacts to trauma

Trauma can profoundly affect the body. Potentially traumatic experiences trigger the body’s “fight or flight” response. In this state, the heart rate increases, and respiration speeds up as the sympathetic nervous system prepares to defend against danger.

The disruption of hormones and enzymes caused by the experience can lead to difficulty regulating temperature, breathing and digestion. The gastric emptying system turns off. It causes constipation, loss of appetite, and/or motility (muscles in the wall of the gut) issues.

“It’s like the fire alarm in the house is going off,” says Roberto. When this happens, the parasympathetic system, sometimes called the “rest and digest” system, stops working.

These acute responses can make an imprint that has long-term effects. Families of children with PFD can mitigate the impact of trauma with support and care. “Trauma leaves a mark, but it’s up to us to find those who can help us get out of being stuck in the triggered cycle,” says Roberto

Understanding trauma-informed care for children with PFD

Trauma-informed care is an approach to support those who have had adverse experiences during their lifetime. Unlike traditional forms of care, which may not be sensitive to traumatic experiences, trauma-informed care recognizes the impact of trauma on an individual’s behavior, thoughts and emotions. The goal is to create a safe space for healing and recovery.

Trauma-informed care involves four key components, known as the “Four R’s:

  1. Realizing how trauma can affect an individual
  2. Recognizing signs an individual has experienced trauma
  3. Responding effectively with appropriate interventions
  4. Resisting re-traumatization by promoting safety, trust, empowerment and collaboration

Understanding these components is essential to effectively support children with PFD, who may be dealing with the long-term effects of traumatic experiences.

Trauma can disrupt eating patterns by causing fear or anxiety around food, leading to refusal or avoidance behaviors. This compounds feeding issues children with PFD already experience.

 

For children with PFD, trauma-informed care offers a safe way to explore emotions while helping them build positive relationships around eating.

How to navigate the impact of feeding trauma

The effects of trauma on children with PFD can be challenging. What’s traumatic to one child may barely register for another. And the traumatic experience often isn’t even something the child can recall.

This is why it’s crucial to understand each child’s experience, recognize triggers and provide emotional support. Therapeutic interventions such as EMDR can help children reprocess past traumas without needing to talk about them. In her practice, Roberto uses a sand tray and play therapy to help children process previous experiences and feelings.

“They may not have verbal recall and a story to tell, but they remember feeling a certain way,” she says.

A child’s visit to a doctor’s office, for example, can trigger a panic attack because they don’t want to lie on the table, says Roberto. “It’s really because of this unprocessed adversity, which for many people may come from a place of not having control.”

With EMDR, she helps children uncouple the emotional tenacity from that memory.

Benefits of trauma-informed care for children with PFD

Trauma-informed care provides a safe space for families to build trust and better understand how to support their children. Trauma-informed care allows children to explore the experiences that triggered their trauma and develop improved emotional regulation skills. It can also lead to an improved appetite and a willingness to try new foods.

When children get emotional support, they can better articulate their needs to their parents and healthcare team. A therapist can help a child develop practical communication skills and problem-solving techniques. With practice and guidance, these tools allow children facing medical trauma to cope more effectively in difficult situations.

3 ways to support children with feeding trauma

Finding the right resources for trauma-informed care can be challenging, but more resources are developing with a heightened awareness of trauma’s impact.

Focus on the whole family
Roberto says supporting the entire family is key to helping children heal from traumatic events. “Families are like a tree, so if one limb is struggling, the others will start to wither as well.”

Give kids time
Children with medical complications react to stress in the same instinctual way as anyone who senses physical danger. Anyone who’s had to submit their child to medical testing has likely witnessed the fight, flight or freeze response. Roberto recommends slowing down in those moments. “Listen to your kids and give them the time to get there. It’s not about our agenda, as parents or as clinicians. It needs to be about the child’s agenda and providing them with the support they need in the moment.”

Get outside support
Talk to your child’s doctor or pediatrician about what type of care is available in your area and look for mental health providers who specialize in this trauma-informed therapy.

Online resources can also be helpful when seeking out trauma-informed care. The National Child Traumatic Stress Network offers comprehensive information geared toward helping families affected by traumatic events.

Finally, it’s important to remember that although trauma can be difficult, it can be an opportunity to move forward and break the trigger cycle. Roberto says, “We all have our experiences, but we don’t have to let them define us or limit our future possibilities.”

By understanding the trauma children with PFD can experience and working through it with compassion, children can regain control over their lives and reach their full potential.


Anka Roberto, DNP, MPH, APRN, PMHNP-BC an assistant professor at the University of North Carolina Wilmington and has authored book chapters and numerous publications on trauma and resilience. In her private practice, Holistic Healing, PLLC, she provides functional psychiatry care and EMDR therapy to target and reprocess negative life experiences across the lifespan.

Roberto is the keynote speaker at the 10th Annual International PFD Conference on April 13-14. Click here to learn more and register.

Collaboration with Arizona Women, Infants, and Children (WIC) program

Published by Feeding Matters on Mar 25, 2023

Recently, Feeding Matters has been working closely with the Arizona Women, Infants, and Children (WIC) program. WIC is the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) which provides US federal grants to states for supplemental foods, health care referrals, and nutrition education for low-income pregnant, breastfeeding, and non-breastfeeding postpartum women, and to infants and children up to age 5 who are found to be at nutritional risk.

We are excited to share that as a result of our relationship with Arizona WIC, the nutrition coordinators and directors, who are the front line folks supporting families eligible for this program, have been trained on pediatric feeding disorder (PFD). Specifically, Arizona WIC coordinators and directors are trained on the PFD Co-Morbidity and WIC Risk Code spreadsheet so that any time one of them uses one of the codes associated with PFD, they will be prompted to refer the family to Feeding Matters and our Infant and Child Feeding Questionnaire. For example, if a child eligible for Arizona WIC is noted as having a genetic or congenital condition, they would be referred to Feeding Matters, specifically to our questionnaire to dig in deeper on their child’s feeding and have a source of support through us.

“This collaboration between the Arizona WIC Program and Feeding Matters ensures that children who have a known condition that often co-occurs with pediatric feeding disorder are more easily identified, identified quickly, and are referred to Feeding Matters to get the support they need.”
Brittany Howard, MS, RDN, CLC (WIC Nutrition Services Administrator)

The collaboration does not end there. They have also added Feeding Matters as a resource to their online education courses that they offer to all of their staff.

We know that PFD impacts one in 37 children under the age of five in the United States and are confident that this partnership will lead to earlier identification and intervention of children with PFD.

FROM THE PFD ALLIANCE: A FOCUS ON EDUCATION

Published by Amy Delaney, PhD, CCC-SLP on Mar 22, 2023

As we approach our 10th Annual International PFD Conference, I look forward to learning from expert colleagues about new ideas and strategies that we can use in the care of children with PFD. It comforts me knowing that Feeding Matters has worked diligently to offer content that has been both reviewed for bias and is rooted in evidence. This makes me reflect on the current educational landscape and how it has changed over time.

Thinking back to when I first entered the field (and yes, I’m aging myself), sources for educational content were textbooks and hard copies of journal articles, either arriving in my mailbox or checked out by me at the library.    Unfortunately, these old-school sources were nearly outdated by the time they entered my hands.   In-person conferences were the only method for me to learn what things were at the cutting edge from my peers and scientists in the field.

Learning today has never been easier! Today’s technology affords endless formats and venues from which we receive information. We have access to first-hand information directly from researchers, clinical experts, and parents. We see examples of different disorders and impairments and clinically validated intervention strategies while standing in line for coffee, or even while on a walk.

Unfortunately, access to everything all the time can be overwhelming, and it may be difficult for a learner to navigate material without a good understanding of its strengths and potential weaknesses. It may seem that everyone is an expert and it’s hard to discern that the information being shared may not be objective, evidence-based, and/or appropriately interpreted.  It may be difficult to know which sources to prioritize for one’s learning.

What are my best options? Who am I listening to and what is the underlying evidence? For social media, if one source has more followers than another, is it more likely to be correct or validated? Who is vetting the information? Here are a few pitfalls to keep in mind:

  1. Saying something with confidence and fancy graphics does not make it sound evidence.
  2. A greater number of followers does not guarantee information is superior to that from a source with fewer followers.
  3. Be mindful of individuals who discount or contradict what you have learned to be reliable and clinically validated information.
  4. Conversely, be mindful of individuals who purport that information is accurate because it’s how it has always been done.
  5. Is the information based on published studies or other peer-reviewed content?
  6. Is the source only promoting a product?
  7. Is the source acting in a professional manner that is ethical and considerate of other opinions?

As we continue to navigate our educational options, consider some of the following suggestions:

  1. Use multiple sources for learning. Maintain a broad diet of information that includes social media, webinars, and in-person meetings.  A broad educational repertoire is always best.
  2. Dig a little deeper into a new source of information. Learn about your favorite vloggers and what their experience may be. What is their profession and their training? What population of children do they see? Know who you are listening to and trusting to contribute to your clinical journey.
  3. Think critically about what you’re learning. Does it make sense? Does it continue to enhance your knowledge and practice? Does it contradict well-known evidence?
  4. Rely on your professional organizations to review the current state of information and evidence and provide experienced perspective on how new ideas may fit into established paradigms.
  5. Advocate that we need pediatric feeding and swallowing taught at the university level to give everyone a foundation.

We, as a community of PFD providers and families, must lift each other and support each other in our learning to advance the field and the lives of children and families with PFD.

Amy L. Delaney, PhD, CCC-SLP
PFD Alliance Education Chair

best practices within intensive care settings

Published by Erin Ross, PhD, CCC-SLP on Feb 14, 2023

Feeding begins at birth, and for many infants who are born preterm or with medical complications, feeding experiences happen within intensive care units. An international consensus committee has published standards and competencies for best practices within intensive care settings. Currently there are six general areas that are covered by these recommended practices. One is for feeding, eating and nutrition delivery. This is a great resource for people working within intensive care settings with infants – whether in neonatal or cardiac units or other specialty units. There are eleven standards within this area, with multiple competencies within each. Rationale for each standard, along with the body of evidence used to create the standard, are freely accessible. There are also checklists available to measure your current practice.

A common question is “but how do I do this?” Feeding is multi-dimensional and making any changes to current practices can be very overwhelming. Recently a “put into practice” conference produced a White Paper that is also available. I am including this resource for you here.

If you ever wanted to compare where you are (personally or within your unit) with what is possible, this is the place for you. Check it out – and keep coming back. It is currently in the process of being updated with new research and the standards are being evaluated. In fact – you have the opportunity to provide feedback for this process as well – all on the website here.

Does your child need a feeding tube? Here’s what you need to know

Published by Dana Williams, MD on Feb 09, 2023

A pediatric gastroenterologist debunks 4 myths about G-tubes and normalizes a feeding tube for those kids who need it.

Dana Williams, MD, Medical Director, Feeding Disorders Multidisciplinary program; Medical Director, Aerodigestive Digestive Program at Phoenix Children’s Hospital

When I see patients who are likely candidates for a G-tube, I can already imagine their lives at home. Days revolve around feedings. Every hour, on the hour, the parents attempt to get an ounce of formula or breastmilk into their little one’s belly. The parents are exhausted, and so are their children. Everyone feels like a failure.

In spite of the struggle, no one wants to bring up a G-tube. So, I do.

As director of a team of physicians, therapists and dietitians at Phoenix Children’s Hospital, I see hundreds of children each year with pediatric feeding disorder (PFD). For many of them whose medical complexities make oral eating a struggle, a gastrostomy (G) tube is a key medical intervention. G-tubes help these children develop and thrive, while preventing malnutrition and dehydration.

A G-tube is surgically inserted through the abdominal wall and into the stomach. It’s held in place by an internal device called a balloon. The tube can be used to deliver liquids, purees and medication.

This sounds scarier than it is.

Like any surgical medical intervention, deciding to directly feed a child through a gastrointestinal tube inserted into their stomach is a big decision. For those children who are a good candidate for a G-tube, the benefits of a feeding tube and the risks of not getting one far outweigh any risks.

There are many benefits of getting a G-tube. Some of those include:

  1. Improved nutrition and hydration: A G-tube provides direct access to the stomach for nutrition, fluids and medication, ensuring children get the nutrition they need.
  2. Reduced risk of aspiration: A G-tube can reduce the risk of food and liquid entering the lungs, a common problem for children with pediatric feeding disorders.
  3. Increased independence: Children with G-tubes can engage in activities they enjoy without the stress of constantly worrying about eating or drinking.
  4. Better sleep: A G-tube can provide continuous nutrition and hydration overnight, leading to better sleep and improved overall health.
  5. Eased caregiver burden: Parents get relief from constantly trying to provide adequate nutrition and hydration.
  6. Improved weight gain and development: Children with a G-tube often see improved weight gain, leading to better overall health.
  7. Comfort: Removing the alternative temporary nasal tube can make it more comfortable for a child to eat. Depending on each child’s medical journey, they may be more likely to eat when they don’t have hardware in their noses.

Still, many parents who consider a G-tube for their children can feel like a failure. The truth is the opposite. Feeding isn’t something parents or doctors or anybody can control. If a child doesn’t want to eat, or they can’t eat, then there is nothing anyone can do to make them. Of course, this can change over time with multiple levels of support. But the parents of these children haven’t failed.

Debunking 4 major myths about G-tubes

Most of the time that parents express hesitation about the G-tube, it’s because of a fear of one or more of four common myths. Talking about the reality of what a G-tube will mean for a child and the family helps parents make an informed decision.

Myth #1: A G-tube is permanent
A G-tube is a temporary solution to supplement or replace oral eating and drinking. I have countless patients living healthy lives after the removal of their G-tubes who will attest to that fact.

How long each patient needs a G-tube and whether they’re receiving all or some nutrition through the tube depends on each child’s needs. When a family is deciding about G-tube surgery, we discuss the anticipated use. In many cases, a G-tube can supplement – rather than replace – oral eating.

We also discuss the process for removing a G-tube for those kids who can eat fully orally one day.

Myth #2: Infection is common with a G-tube
Infections do occur for some people with a G-tube, but they’re not common. Some children are more sensitive, and there is no way to predict that. For most people, the channel for the G-tube heals nicely. Similarly to an ear piercing, it becomes epithelialized so that the tube can comfortably pass through the area. We monitor the insertion hole and mitigate the risk of infection by teaching parents and older children how to clean the area.

Myth #3: Kids can’t eat regular food with a G-tube
The majority of kids with G-tubes in our practice also eat orally. This varies for each child, depending on their medical issues. Most children I see even take pleasure in oral food. The G-tube is an important tool that gives children time to develop the ability to eat on their own terms.

Myth #4: A G-tube means kids won’t be motivated to eat orally
While there is some truth to this myth, it’s not entirely accurate. For many kids with PFD, it doesn’t take much for them to feel full. This is why we individualize treatment so that each child receives the amount they need. Children can still learn hunger cues and get exposed to meal time routines.

What is a sign of success for a child with a feeding tube?

Just as the treatment plan for every child with a feeding tube is different, success also varies. To me, the main signifier of success is when the patient and family are in close conversation with their doctor. Every journey is different, but having a team of the right medical provider matters. It’s not up to parents to walk this journey alone.

Beyond that, any step forward for a child is success. Some examples are as follows:

  • A child who aspirates due to a medical condition safely learns to taste some food and enjoy family meals.
  • A child slowly learns to eat orally through feeding therapy post heart surgery.
  • A child who outgrows some allergies and tries more foods.
  • A young adult who goes off to college even though he still only eats seven foods.

Parents of children with pediatric feeding disorder no doubt feel responsible for ensuring their children get the nutrition they need to grow and develop. For those children who are good candidates for a feeding tube, a G-tube is an important tool to help them along their feeding journey.


Hadyn Van der Molen has had a G-tube since he was nine months old. His mom, Heidi, program manager for Feeding Matters, recalls feeding Hadyn around the clock with a 2-oz. bottle. The only time he’d ingest it was when he was sleeping.

pediatric feeding tube
Feeding Matters kiddo, Hadyn with NG-feeding tube
 
pediatric feeding tube
Today at 13, Hadyn only uses his G-tube for water and medicine.

Mighty Milk or Diet Diversity?

Published by Raquel Durban, MS, RD, LDN on Feb 01, 2023

This blog post is published as part of a paid partnership between Feeding Matters and Reckitt Mead Johnson. Learn more about our corporate partnership program and ethical standards for collaboration.

Food shopping has evolved over the years. Long gone are the days of only cow’s milk or soy milk. Now it seems there is milk made from every type of plant! You will likely find yourself questioning, “which is best for me?” or “is there a better option to use as a replacement in cooking or baking?”.

The range of alternative milk beverages includes almond, cashew, soy, coconut, pea, oat, walnut, flax, hemp, macadamia, and rice – as well as what seems like a new option each week!

The nutrients are just as varied as the plants from which they are derived. The question is, “Which milk is best for ME?” because your nutrition needs, and taste preferences will differ from another person’s.

The nutrients in cow’s milk are protein, calcium, vitamin A, vitamin D, vitamin B12, riboflavin, niacin, phosphorous, pantothenic acid, zinc, selenium, iodine, and potassium.

Avoiding cow’s milk does not mean you have to miss out on its great nutrition! Other sources of these nutrients include:

  • Protein: meats, beans, some plant-based milk.
  • Vitamin A: beef liver, sweet potato, carrots, cantaloupe, red bell peppers, fortified cereals, mango, spinach.
  • Vitamin b12: beef liver, clams, tuna, fortified nutritional yeast, salmon, beef.
  • Riboflavin: beef liver, fortified breakfast cereals, beef, clams, almonds.
  • Niacin: beef liver, chicken or turkey breast, prepared marinara sauce, salmon, tuna, pork, beef, rice, fortified breakfast cereals, russet potato.
  • Phosphorus: salmon, scallops, chicken breast, lentils, beef, cashews, russet potato, kidney beans, brown rice, peas, oats, egg.
  • Pantothenic acid: beef liver, fortified breakfast cereal, shitake mushrooms, sunflower seeds, chicken breast, tuna, avocado.
  • Zinc: oysters, beef, crab, lobster, pork, baked beans, fortified breakfast cereals, dark meat chicken, pumpkin seeds, cashews, chickpeas.
  • Selenium: Brazil nuts, tuna, halibut, sardine, pork, shrimp, enriched pasta, beef, turkey, chicken, egg, and brown rice.
  • Iodine: most enriched grains and iodized salt.
  • Potassium: apricot, lentils, squash, prunes, raisins, potato, kidney beans, orange juice, soy, banana, chicken breast, salmon.

Here are some tips when shopping for your new favorite:

  • Choose unsweetened varieties with little to no added sugar. Those labeled “original” often contain large amounts of added sugar that add up quickly.
  • If using plant-based milk to replace cow’s milk, choose one fortified with calcium and vitamin D.
  • Children ages 1-2 should receive full-fat versions with a nutrient content similar to whole cow’s milk. Adults, however, can consider low-fat and fat-free versions.

Reference: https://ods.od.nih.gov/


Raquel Durban, MS, RD, LDN is a registered dietitian specializing in the dietary management of families with food allergies. She received her master of science degree in nutrition from the University of Maryland and completed a nutrition internship at the University of North Carolina at Greensboro. As a recognized authority on the dietary and nutritional management of food allergies, she is a frequently invited speaker at allergy and immunology conferences and has the pleasurer of precepting dietetic interns. Ms. Durban has contributed her expertise to peer-reviewed publications and continuing education programs. 

Ms. Durban is a steering committee member and cochairs the internship program of the International Network of Dietitians and Nutritionists in Allergy and serves on the Medical Advisory Board of the International Association or Food Protein Enterocolitis. She plays and active role in the American Academy of Allergy, Asthma and Immunology (AAAAI) and the American College of Allergy, Asthma and Immunology (ACAAI). She serves on the organizations’ numerous committees, collaborating with other health care professionals and patient advocacy groups to improve quality of life and advance understanding of families living with the challenges of food allergies. 

From pediatric weight gains and losses to restricted diets for food allergy and disease management, she does not believe there is a one-size-fits-all answer for success. She will work to find the best balance of meeting nutritional needs with lifestyle demands and ensure collaboration with other members of the care team.