Accurately Diagnosing PFD and ARFID: Why Misdiagnosis Can Do More Harm Than Good
Published by Jaclyn Pederson, MHI on Apr 21, 2023
I recently heard about a distraught mother of an eight-year-old, whose daughter spent time in an eating disorder clinic. She was diagnosed with avoidant/restrictive food intake disorder (ARFID), which is often described as extreme picky eating.
After completing the program, her child showed no improvement and even developed more anxiety around eating. Minutes into the conversation, it was clear that this child most likely had undiagnosed pediatric feeding disorder (PFD). An effective assessment and treatment plan must address more than psychiatric and behavior therapy for any child who has been identified as having concerns with feeding.
As CEO of Feeding Matters, I hear these stories regularly.
In the two years since PFD became an official ICD diagnostic code, I’ve seen hundreds of families in the U.S. and around the globe become more informed and able to access better care for their children. Naming the issue that has many symptoms and requires a multidisciplinary approach has given families tremendous relief and support.
But, our work is far from over.
What happens when PFD is mistaken for an eating disorder
Children as young as one are being diagnosed with ARFID when they actually have PFD. In plain terms, this means children with a medical and multidisciplinary feeding disorder are instead diagnosed as having a psychiatric condition.
The actual cause of children’s limited intake or picky eating is sometimes overlooked. It’s nearly impossible to resolve a mental or behavioral eating issue without first looking into the other domains that contribute to eating function, including medical and feeding skills.
I’ve seen with my infant how eating is a learned behavior. My baby has a cow’s milk protein allergy and challenges with his suck and anatomy. Once we identified his issues, we switched formulas and found a better bottle for his anatomy. Even then, it still took a month for him to develop the necessary feeding skills to consume greater than one ounce per feeding. My child only had a feeding challenge, and was not diagnosed with PFD. Still, this shows how a holistic assessment and treatment plan that considers the interplay of the four domains of PFD allows for targeted interventions that match each child’s unique needs. With early identification and treatment of medical and feeding skill dysfunction, the hope is that the long term psychosocial impact can be reduced.
The longer feeding challenges go untreated, the greater the psycho-social impact. As children get older, psychological difficulties become the primary drive for feeding dysfunction and the problem evolves from a developmental one to a mental health condition.
Why PFD is often misdiagnosed as ARFID
ARFID is a mental health diagnosis for children who have the following:
- Significant weight loss (or failure to achieve expected weight gain or faltering growth)
- Marked interference with psychosocial functioning
- Nutritional risk or deficiency
- No coincident body image problems
- Disturbance is not due to a medical condition
PFD is a multidisciplinary diagnosis that includes feeding dysfunction in any one or several of four domains:
- Feeding skill
There are many reasons PFD is mistaken for ARFID. The main reason is that PFD is a much newer and less widely-known diagnosis. We facilitated the publication of a paper that provided a consensus framework of PFD in 2019. PFD became an ICD code in the U.S. in 2021, over a decade after ARFID. PFD has an international impact because the diagnosis was centered around the international classification of functional disability and health. The PFD diagnosis and subsequent ICD code use the International Classification of Functioning, Disability and Health (ICF) framework. This framework allows the international medical community to evaluate the functional impact feeding has on a child’s activities. It also promotes a multidisciplinary, holistic assessment of how the four domains, medical, nutrition, feeding skill, and psychosocial, interconnect. This ensures the root cause of a child’s feeding challenges are identified.
However, psychologists and practitioners in the eating disorder world tend to know only about ARFID.
Information available on social media is another reason PFD is misdiagnosed as ARFID. Parents concerned about a child’s picky eating can go down a rabbit hole of online information that’s more likely to point to ARFID as online it gets inaccurately labeled as “severe picky eating.” The unfortunate piece to this is that in these conversations about ARFID and severe picky eating, social media presents a misleading picture that fails to take into consideration the medical or feeding skill reasons why a child might have trouble feeding.
Understanding PFD and ARFID
PFD and ARFID in children and young adults share symptoms and behaviors. The child does not eat as much or in a manner expected for a child’s age. The cause and the treatment for this behavior is what varies. Some children with PFD go on to develop ARFID.
A classic case of ARFID is someone with no history of feeding problems before its onset. For example, a child has a choking incident and then is afraid to eat. Another example would be a child with no feeding skills issues but is described as having odd eating habits.
A child with undiagnosed PFD will have a history of feeding issues. These can include any combination of issues, including: allergies, reflux, challenges with bottle feeding, and trouble transitioning to solids.
Treatment for a feeding disorder differs from an eating disorder. For PFD, a clinician will determine if the child is safe to eat. Does he have the skills to chew and swallow? Are there allergies that may be present?
When a child is treated only for ARFID, they’re entering a mental health pathway that can often be difficult to assess and identify if there are other domains present.
Education is vital to improve diagnoses of PFD and ARFID
Education is the key to providing better treatment for children with PFD and ARFID.
We at Feeding Matters are working with clinical experts in the field to help clarify how to determine the correct diagnosis and treatment plan for those who have either PFD or ARFID – or both.
Our goal is that clinicians will better understand both diagnoses so that more patients can be identified earlier and access effective treatment.
Parents need to be aware that PFD can sometimes be misdiagnosed as ARFID or that if PFD goes undiagnosed it can become a more severe ARFID. This knowledge will help more families get treatment from clinicians who understand how to treat PFD and how the two diagnoses overlap.
The earlier we help more families identify the true issue, the more likely we will ensure they get the help they need.
Are you looking for more information? Visit Feeding Matters’ resource page: PFD and ARFID.