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Getting the most out of feeding therapy for PFD: A step-by-step guide to finding the right pediatric feeding therapist

Published by Nicole Williams, OTD-OTR-L, at Desert Valley Pediatric Therapy in Arizona on Feb 15, 2024

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.

therapist and child sitting across from each other smiling and interacting

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.

hands of adult and child, touching foods to explore textures together 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.

baby being spoon-fed

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.

A story of triumph over pediatric feeding disorder

Published by Feeding Matters on

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

boy (Julian) smiling while sitting at a table with a bowl of ice cream in front of him

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.

child wearing a blue hat, smiling while sitting at the table with fries

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.

  1. 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.

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

Pediatric feeding with empathy: 8 ways to think through a compassionate lens

Published by Marsha Dunn Klein, pediatric occupational therapist on Aug 17, 2023

On a vacation to Monterey, Mexico, I sat at a fancy restaurant and friends presented me with a plate of worms. Since I am a curious eater, and it was a delicacy, I cautiously took a bite.

At that moment, I couldn’t help but think of my feeding therapy clients. After decades as a pediatric occupational therapist, I wondered, “If somebody made you eat this, held your hands down while they put it in your mouth, or made you eat three bites of those worms before you could have your regular dinner, would that be fair?”

Understanding how children feel during mealtime is the pediatric feeding with empathy that I try to share in my teachings with parents and feeding therapists. Empathizing with why children struggle to eat or drink is key to setting clients up for a lifetime of better feeding. “We need to look deeper to find a compassionate lens. The foundation for supporting all areas of feeding therapy has to be fully cemented in an understanding of empathy, connection, safety, motivation, enjoyment and brain science.”

In a presentation at the International PFD Conference, I outlined eight mindset shifts to consider for a more empathetic approach to PFD feeding therapy.

pick highlighter marking the word "empathy" in a dictionary

Communicate the empathy circle

Empathy is the ability to understand and share the feelings of another. It’s the ability to sense another’s emotion and imagine walking in their shoes. For children and their parents, pediatric feeding with empathy means seeing food as they see it and reflecting to them that they’ve been understood.

Communicating what might be going on for a parent or the child is called the empathy circle. We need to find empathy for the child and what they might be going through. And we need to help parents have empathy for their child and understand what might be going on for them.

Look beyond just calories during mealtime

Nourishing children needs to include more than focusing on calories. Having a child feel like a celebrated part of mealtime is essential to skill mastery. Food is nourishment, but it’s also a means of communication and socialization. It can be about giving and receiving love, celebration and family time. This is why mealtime is an important opportunity to develop strong parent-and-child relationships. We need to ensure we’re also nourishing little souls with pleasant, safe company.

Shifting adult and child roles during meals

The role of adults at mealtime is to decide the menu and provide a safe environment for learning. When children come to the table, it’s to be nourished and have energy for the day. That means some of the foods offered at that mealtime must be foods the child knows and will comfortably eat while they’re learning about other foods that the family and siblings are eating.

Many of us have approached feeding therapy as if it’s our job to “get food into kids.” However, it’s the child’s job to decide what and if they’re going to put food in their mouths, and our job is to offer a variety of foods to allow for opportunity and learning about foods so the child can discover what he LOVES.

Rethink exposure to new foods

In the past, exposure to new foods meant getting a child to put it in their mouth. In some cases, a child gets pushed past their sensory safety zone. Exposure done with pressure can decrease the enjoyment of eating, along with any benefits of that exposure.

Asking a child with PFD to try a mouthful may be way too big of an ask. A little taste, lick, touch or even seeing others enjoy a food can be considered an “exposure.” Instead of thinking of “exposure” where adults often ask (or demand) that children interact with that food in a certain way, can we think of “opportunity” where the child gets to explore the food and decide if or when ready to try it on their own.

family eating and sitting together at a table

Work with the whole family

Both parents and children bring their experiences to the table. A trusted connection with parents from infancy supports a child’s ability to self-regulate. Feeding therapists must be sure to support parents’ success. This means asking assessment questions that reflect what’s going on with a child and parent. It also means including parents in planning and solutions with questions like: Of all the things we did today or talked about today, what would you like to try this week?

Consider why a child says no

A child says no to food for a reason, such as:

  • They don’t feel well
  • The sensory challenge is too great
  • They have a difficult motor response to that food
  • They have poor regulation
  • They are too worried

Consider food refusal as communication. It invites us to be curious about what’s going on and how we can make that child feel more ready and safe for this mealtime interaction.

child playing with food, holding a piece of bread that has a smiley face cut out of it up to their face

Shift from food tolerance to enjoyment

Tolerance is the capacity to endure pain or hardship. But enjoyment means satisfaction, pleasure and gratification. Food constitutes not only the taste but also sensory aspects, socialization, experience and satiation. Many of us have used the word “tolerance” in our feeding goals. But if a child doesn’t like that food, why would we settle for “tolerance” when we could aim for “enjoyment?”

Pay attention to communication cues

Forcing a child to eat when the adult is the more powerful figure in the relationship could mean missing cues of a child’s sense of safety, worries and need to protect themselves. It’s easy to push into their stress and worry zone and then call food refusal a behavior problem. This can unintentionally teach a child to ignore their body and sensory cues.

When we allow children to tune in to the wisdom of their own bodies, we’re supporting safety. Children who experience safety with us as parents and therapists are better able to regulate themselves. Pediatric feeding with empathy means seeing them, hearing them, valuing them and understanding them, to climb into their skin and walk around in it.

Ultimately, eating is a learned behavior. How parents and children interact over mealtimes matters. This is why parents and feeding therapists must do what they can to create positive memories around eating, food and mealtimes.

View Marsha’s International Pediatric Feeding Disorder Conference Session: Shifting our Focus in Pediatric Feeding Towards a Compassionate Lens here


Marsha Dunn Klein has spent over five decades working in feeding therapy as an occupational therapist, author, inventor and co-founder of the Get Permission Institute. This article is based on a presentation from the 2023 Feeding Matters International Conference.