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.

Food Is Sensory: Post-Event Blog

Published by Marsha Dunn Klein on Oct 23, 2019

Post-Event Blog

  • Is there a formal assessment that parents and healthcare professionals can use to help “grade the ask” for children who refuse to eat? Do you have any strategies you recommend?

First of all, I believe we need to be careful about the words we use.  I, personally, do not usually talk about children “refusing to eat”, and do not chart “refusal behaviors”, as such.  I chart other things.  I see the adult role as “offering” appropriate foods and children can eat them or not.  I do not describe children as “refusing”.  I describe them as communicating something to us and we, as their caring grownups, need to play detective and try hard to understand why they are not YET able to eat that food.  I think when a child is not taking the food we offer, there is a reason.  But, might we be asking too much?

In my new book, I talk about grading our ask.  There is not a formal grading the ask assessment, just guidelines.  Is the food or liquid safe (and does the child BELIEVE that?) Is the food the right developmental ask? (Is the child developmentally ready for that food, utensil, or eating skill?)  Is the food the right sensory ask? (Is the child YET comfortable with the look, smell, sound, texture or taste of that food?  Can we modify it so the sensory ask is smaller, more graded, and the child is more motivated to try it?) Is the food the right motor ask?  (Does the child have the safe and confident eating skills needed for the food offered?)  Is the food the right emotional ask?  Can we start where the child feels comfortable and successful and tiptoe from there? If the child has had scary or worrisome experiences with that or similar food or mealtimes in the past, are we pushing him right into LOTS OF WORRY with our ask?  Can we scale that back?   Are we expecting the right independence ask?  Are we requiring the child to eat when WE feed him, when he is perfectly capable of feeding himself?

We could chart refusal behaviors, but maybe “refusal” in that situation is the right response for that child from his perspective.  I actually believe I could get ANY child to “refuse” just by the way I presented a food.  I look at refusal as MY NEED TO ADAPT, (grade the ask) NOT the child’s need to comply with my demand.

  • How do you define a “successful” treatment for a child with a pediatric feeding disorder? Is there criteria you recommend?

Successful treatment for a child, in my opinion, requires the parent to be included as an active participant in the WHOLE process. We need to support families at the pace the child AND PARENT are comfortable. Just like I believe that if the child is “refusing” they are communicating some type of struggle to us, and WE MUST adapt, I also believe if a parent is not successful, then we, as supportive team members must try to understand why, meet the parent where they are at, where they are ready, and re-think how we are offer support.  Just like not all treatment strategies work for all children, not all home strategies work for all parents.  We adapt and partner with parents to determine next steps.

We think of success, not in number of bites or reducing the number of refusals, though that is one way to define progress.  Instead, we look at the development of life-long skills, such as demonstration of a positive tilt, opening the mouth to indicate readiness for the offered spoonful or nipple with the child pacing the meal rather than the adult. We look at the life-long skill of confidently learning new food trying skills.  We look at being able to eat with the family at a family meal.  We look at positive food interactions (being able to touch food and pass food, serve food, help in mealtime jobs).  We look at how many ways can the child feel celebrated around food and meals, (rather than feeling like he is disappointing his grownups every meal). Success can be the child bringing her own spoon to her mouth to feed herself rather than being fed by an adult.   Success is also helping the child feel better, take in the needed nourishment, learn the skills to confidently chew and swallow foods and liquid, and enjoy the sensations of eating, and enjoy the mealtime with others. Can it be a success if a child can happily come to the mealtime, enjoy the food offered, and be allowed to leave the table when full?

The webinar I did for Feeding Matters is about how Food is Sensory.  I outline lots of ways to look specifically at the look, smell, sound texture and taste of foods so we can carefully offer new foods in ways that dilute the worry and allow children to be active and joyful participants in the process.

  • What can parents and healthcare professionals do to create an environment that encourages positive mealtime experiences?

The first thing I like to do is help parents and professionals imagine THEY ARE THE CHILD who is struggling to eat.  Imagine how THEY themselves would like to be approached if THEY had a big mealtime worry, if they were worried about texture, or swallow safety, or if they felt badly when they ate, or if they could not manage the skill of eating.  I have always thought that putting myself in someone else’s shoes is a great starting place. (Check out the Grasshopper Story ).

The second thing I think about to encourage success is starting from a place of MEALTIME PEACE. When parents and children are totally stressed about mealtimes, it is hard to help either of them want to try anything new.  I ask parents, what would YOU need to do in YOUR house to achieve Mealtime Peace, a mealtime with no anger, crying, pushing, arguments, and no pressure?  Maybe the child needs rehearsals, to learn how and what others eat.  Maybe she needs food rehearsals where she gets to explore the food before well-meaning grown up puts it in her mouth.  Maybe the child needs to be offered new foods or textures in such tiny incremental sensory changes so that it is hard for her to notice (or worry ) about the change?  Maybe the child needs to eat comfortable foods at the meal and work on new food trying away from the meal, bringing the new food or skill to the table when comfortable? We aim for Mealtime Peace because when calm and comfortable, children are in more of a learning mindset rather than an escaping mindset. They can learn about family togetherness, manners and what to expect from a meal. They can trust at that place of Mealtime Peace that they will not be forced or pressured into trying new, that there will not be sensory surprises and that they are a celebrated part of the meal.

  • What tips do you have for families and healthcare professionals looking to introduce new foods to a child with a pediatric feeding disorder?

When introducing new foods, can we start with foods or liquids that the child enjoys or is currently successful with?  Success, comfort and enjoyment can be our starting place.

I like to offer rehearsals in trying new foods.  In a rehearsal, a child gets to see others eating and interacting with that food.  They get to see what we do with that food and how we eat it.  They get to explore the look, smell, sound, texture and taste of the food before it ends up in their mouth. No sensory surprises.   They get to help put it in their own mouth, or to their own lips when THEY are ready, when the rehearsal was motivating and they show interest or readiness.  Sensory exploration of the foods helps the child be ready for it. For example, smelling a food is a rehearsal or preview that gives the child an idea about the taste before it is put in her mouth. Touching the food can give the child the idea of the food texture, again, before it is on her tongue.  If you were worried about trying a new food, would you put a food in your mouth that you could not, would not even touch?  Having these sensory rehearsals can really help.

  • Considering the newly published consensus definition of PFD, which domain or factor do you feel most greatly influences the child’s relationship to food and the caregiver who feeds them?

In my experience, all the domains of PFD, medical, nutritional, feeding skills and psychosocial, influence the child’s relationship with foods and their caregiver. When a child struggles to eat for any reason, caregivers worry.  Infants and children communicate that their mealtimes are not working for them by not eating, not eating enough, struggling with the motor skills of eating and sensory aspects of foods and, often, pushing their caregiver away. These reactions influence their relationships with food and with those who lovingly want them to eat more or differently.

As parents and professionals try to understand the roadblocks to confident and enjoyable eating, the mealtime interactions can become a stressed communication. The medical aspects of PFD relate to how well the child feels, if they have the endurance and physical abilities to eat.  The nutritional aspects relate to the child’s ability to take in enough nutrition on their own to grow well.  The feeding skills including muscle, motor coordination and sensory aspects of food influence eating enjoyment and confidence.  And the psychosocial aspects of eating relate to the child’s interactions with caregivers and the mealtime. The meal becomes a constant dialogue where the child communicates her abilities and enjoyment and the caregivers listen and adapt to help make the mealtime successful and enjoyable. So, PFD is all of those domains. It is difficult to look at only one when helping children learn to enjoy foods and eat enough.

  • It seems that enjoyment of a mealtime is very individualized. What role might more protocol based approaches have in the treatment of PFD?

I think enjoyment, confidence and internal motivation are big goals in supporting children who struggle with eating.

I personally like the word, “guideline” rather than “protocol”.  I have almost five decades of experience with a more “guideline” approach that is responsive to the child’s reaction.  We offer.  The child is able to take that food, or not.  If yes, GREAT. If no, we adapt the presentation for success to grade our ask. Was the texture, the bite size, the wetness of the texture too much?  Can we adapt for success? When relying on protocols, or teaching protocols to parents, I have found that it can sometimes lead to stricter, less flexible and less individualized interpretations and approach.  I have listened to parents my whole career, and many tell me when they were sent home with a protocol, it did not feel natural and was harder for them to implement in the home.   We can all contribute.   I believe there are many, many ways to support children who struggle to eat and that parent find the approaches that work for them.

About Marsha

Marsha Dunn Klein OTR/L,MEd, FAOTA is a pediatric occupational therapist who has spent a career specializing in pediatric feeding challenges. She received her bachelor’s degree in occupational therapy from Sargent College of Boston University in 1971. She also received a master’s degree in education with emphasis on special education in 1975 from the University of Arizona. Marsha has co-authored PreFeeding Skills editions one and two and Mealtime Participation Guide and Homemade Blended Formula Handbook with Suzanne Evans Morris and Feeding and Nutrition for the Child with Special Needs with Tracy Delaney. Marsha’s new book Anxious Eaters, Anxious Mealtimes: Practical and Compassionate Strategies for Mealtime Peace serves as a great resource for parents and caregivers. She lives in Tucson, Arizona and travels to present locally, nationally and internationally on pediatric feeding issues.

If you haven’t had a chance to watch Marsha’s virtual workshop “Food is Sensory,” you are welcome to participate on demand. It will be available on demand through April, 2020.

Register Here