OT Observations: Pediatric Feeding Therapy – An Adolescent with ARFID

Peds Feeding 1
Pediatric occupational therapists often work with clients who have difficulty with feeding, eating, and/or swallowing as a result of physical differences, behavioral issues, or psychological disorders.

Yesterday was quite an unusual day for fieldwork, as I was able to observe an initial evaluation session with a young client who was being treated for an eating disorder. When my classmate/fieldwork partner and I initially heard the diagnosis, I think both of us immediately jumped to conclusions about the client we would be seeing. This is probably due partly to our own personal experiences both in and out of the OT clinic, but also by the dominant narratives about people with eating disorders that are shown in popular media. In my experience, I have really only seen shows and read narratives of young (middle school to high school age), Caucasian females with disordered eating habits. However, the client we saw fit few of these stereotypes!

Instead of the “scary skinny” young girl we might have expected to see, our client was a tall, talkative 16 year old male who was classified as obese in his medical records. He was an agreeable and intelligent young man who expressed himself clearly, and whose goals included being able to go to restaurants with friends and find something on the menu that he felt comfortable eating. “Josh” had a repertoire of only 10-15 foods that he would eat (like hot dogs, pepperoni pizza, cucumbers, and ranch dressing), and reportedly he would rather “go hungry” than eat a non-preferred food. In addition to his limited diet, Josh was dealing with a somewhat unstable home situation, gastroesophageal reflux disease, and crippling anxiety about his performance in school that frequently caused him to miss multiple days out of school at a time. Josh was being seen at the OT clinic because he had been diagnosed with Avoidant/Restrictive Food Intake Disorder (ARFID), and here is a brief description of the disorder from Sheppard Pratt’s Center for Eating Disorders website:

 ARFID was introduced as a new diagnostic category in the recently published DSM-V.  The ARFID diagnosis describes individuals whose symptoms do not match the criteria for traditional eating disorder diagnoses, but who, nonetheless, experience clinically significant struggles with eating and food.  There are many types of eating problems that might warrant an ARFID diagnosis – difficulty digesting certain foods, avoiding certain colors or textures of food, eating only very small portions, having no appetite, or being afraid to eat after a frightening episode of choking or vomiting. And most of all, individuals with ARFID may have problems at school or work because of their eating problems – such as avoiding work lunches, not getting schoolwork done because of the time it takes to eat, or even avoiding seeing friends or family at social events where food is present.

Although the other components of the disorder are also very significant, an occupational therapist is most likely to become involved when the client’s disorder disrupts his or her engagement in occupations like eating in new surroundings, going to school, or “seeing friends or family at social events where [non-preferred] food is present,” which are examples of the real occupational performance issues that Josh faced as a result of his eating disorder.

The OT I observed doing Josh’s evaluation was part of an interdisciplinary team that worked specifically with people who had eating disorders. Although I’m not 100% sure of all of the team members, it know included a clinical psychologist, a gastroenterologist, and a couple of other specialists in addition to the occupational therapist. Although the OT wouldn’t necessarily see every client with an eating disorder, Josh was referred to her when the other members of his treatment team kind of “hit a wall” and needed to go in a different direction with his treatment.

The OT was a very experienced feeding therapist, and she told us that the evaluation process she used was pretty much the same with every child she saw, although it was flexible enough to fit the needs of children with eating and feeding problems that ranged in severity from mild to life-threatening. There are no reliable standardized exams to use in a feeding eval, so this therapist used mostly unstandardized interviews, sensory assessments, and client reports to learn about Josh and how she might be able to help him.

She started the eval by discussing the results of Josh’s Short Sensory Profile assessment with him to help break the ice and begin talking about how his senses affected his everyday life and eating habits. After this, she began with a “guessing game” in which she wafted various familiar odors under Josh’s nose and had him guess what they were. The results of this activity seemed to indicate to her that he needed more time to process and identify the odors, which could mean that he is “hyposensitive” to olfactory input. Then she moved on to an activity in which she used long cotton swabs to place small amounts of various stimuli on Josh’s tongue and had him guess what they were. She used six different flavors, including pizza sauce, whipped cream, and Parmesan cheese, to test him, and he was very surprised to learn that he gagged at the taste of the sauce – even though he enjoyed eating pizza! He also wasn’t able to identify several of the samples, although they were all things he’d eaten before. And both he and I thought it was very curious that he instantly recognized several samples after seeing what color the swab was! The whole tasting experiment was to help Josh learn more about how much our senses inform our preferences and what we like to eat – such as how visual input can often be the first thing that’s “wrong” with a food that a person doesn’t want to eat and make it difficult for them to event want to try a food, regardless of its other sensory qualities.

Peds Feeding 2
It’s not the best picture, but this is kind of like the OT’s tray of different food samples she had Josh tasting. (Photo by Bart Drees)

After the odor sample exercise, the therapist really got down to business and had Josh trying small pieces of some items he’d brought from McDonald’s that he said were “difficult” for him but that the OT wanted to see him try. She talked with him about how he could start out by ordering plain sandwiches or items at restaurants, thereby avoiding the multiple flavors and ingredients that were so intimidating to him. She also showed Josh several worksheets depicting different bite sizes and food qualities (texture, odor, temperature, etc.) to help him learn more explicitly about the ways in which foods can vary and how he could begin exploring different foods and understanding more about his preferences and aversions.

Although I found the entire evaluation process fascinating, I was almost more interested in the way that that therapist handled herself and interacted with the clients. In classes this semester we are starting to learn and practice more client and family communication, handling, and interaction skills, and this therapist was a great example of how an OT can provide intervention in a way that will be of the most benefit to the client.

Here are just a few of the ways in which this occupational therapist’s training and unique perspective helped her provide what I felt was a very client- and occupation-centered eating evaluation and early problem-solving skills for the family:

  • Considering the social, temporal, and developmental contexts that were affecting Josh’s eating habits and everyday functioning. During the lengthy eval session, the therapist incorporated information from Josh’s intake forms, health history, caregiver reports, and personal statements to create a holistic understanding of the way in which his challenging family situation or his status as a high school junior, for example, might have been affecting his physical and/or psychological function and thus his occupational performance in the area of eating.
  • Incorporating knowledge of multiple body systems into the assessment and subsequent treatment recommendations. The OT began the session by explaining to Josh about the anatomy and physiology of his mouth, and how these very basic components were probably impacting his diet. First she had him describe the kinds of flavors he liked his foods to have, and he stated that he really liked Cajun seasoning and other spicy flavors. Then she had him lick a blue sucker to color his tongue and look in a mirror to examine the number of taste buds that were visible. Upon seeing the smallish amount of taste buds, she was able to ascertain that he might be an “under-taster” who needed more or stronger gustatory input to register a particular food. Immediately after this, she noted that the blue color left his tongue fairly quickly and observed that he might also be a person who produced a fairly copious amount of saliva during the normal course of the day – a fact that Josh readily agreed with – and explained to him how all of the saliva his mouth produced might be “washing away” tastes in his mouth and contributing to his preference for strong, spicy flavors. She also obtained valuable information about Josh’s anxiety surrounding school and how it might be impacting his decisions about eating. Because occupational therapists are trained to understand not only the physical aspects of the human body, but its psychological components as well, the OT had a wide repertoire of tools she could use to better understand and educate Josh.
  • Having a client- and family-centered focus. Throughout the interview, Josh had a grandparent present who was providing information about his diet, health challenges, and home life. Although other clinicians might have suggested that Josh speak for himself and given less credence to his grandparent’s statements, the OT I observed made a point of listening intently to both parties, asking follow-up questions as appropriate, and even involving the grandparent in the smelling and flavor identification portions of the evaluation. By including all of the people present in her interview and evaluation, the OT was able to obtain the best picture of what Josh faced outside the clinic and how she could help him and his family.
  • Allowing the client and caregiver to be the experts. The OT I observed had a lot of experience working with clients who had feeding issues, but she didn’t let her prior experiences lead to cookie-cutter recommendations or overgeneralized assumptions about the kind of things that would be helpful for Josh to try. Instead, she followed the family’s lead and asked about their routines, their eating habits, and their experiences with Josh’s disorder. Taking her cue from a comment the grandparent made about eating potato salad, she made a few suggestions about how the recipe could be altered to make it more appealing to Josh and THEN she allowed Josh and the grandparent to brainstorm about how they could not only alter this one dish, but several other foods that he regularly ate. By allowing the family to help come up with potential treatment ideas that fit into Josh’s comfort zone and his family’s lifestyle, she used the teaching and coaching model of client education (more often used in early intervention settings, but also applicable to other practice areas) to give them the tools they needed to begin thinking through these issues on their own.

At the end of the evaluation, I felt like Josh and his grandparent were sufficiently prepared to begin tackling his eating issues, even starting with the smallest of steps. I am thankful that I had such a unique experience observing an OT doing an adolescent’s eating eval, and it definitely piqued my interest in this area of practice! Because I myself am what might be considered a fairly selective eater, I don’t know that I wouldn’t be a super hypocrite as an occupational therapist who specialized in feeding, but I’m still interested in learning more about it as time goes on and school continues!

For More Information

To learn more about occupational therapy’s role with clients who have feeding and eating problems or eating disorders and other mental health concerns, check out the following links.

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