- Seeing a child receive the diagnosis “failure to thrive” can be painful for parents.
- There’s a new diagnosis available called pediatric feeding disorder.
- It allows treatments, medications, therapies, and specialized formulas to be covered by insurance.
When my child’s doctor described her with the all-too-common diagnosis failure to thrive, it felt like he was telling me I had failed.
What I didn’t know was that “failure to thrive” is neither a disease nor a disorder. It’s a description of a child’s subaverage growth curve, and it defines only their inability to eat or retain enough calories.
This can be caused by other health conditions, but sometimes the problem is harder to identify, stemming from struggles with feeding skills, missed medical diagnoses, nutritional deficits, or psychosocial challenges. For those children, like mine, the stubborn label of failure to thrive persists for years.
But now there’s a new diagnosis called pediatric feeding disorder, and it allows families to get proper insurance coverage of what they need for their children to grow — whether it’s therapies or special formulas. With 20% of neurotypical children and 80% of children with developmental disabilities affected by PFD, the effect on families could be significant.
Many children are affected by pediatric feeding disorder
Like my daughter, Natalie Peterson’s son, Easton, struggled to eat solid food as a baby and never improved.
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“Our journey at first was a constant stream of doctors, procedures, and feeding therapists,” she said. She sometimes worried Easton would never eat enough to grow, or that he might end up on an expensive prescription formula forever.
Infuriatingly, without a clear medical cause identified, insurance companies often refuse to pay for treatments or specialty formulas like Easton’s.
PFD was the brainchild of a nonprofit organization called Feeding Matters. In 2014, the organization set out to create clear diagnostic criteria for the condition, gathering a global group of physicians to collaborate with the American Academy of Pediatrics and others on a consensus paper that led to the adoption of a new code for pediatric feeding disorder.
Codes are used worldwide for tracking and recording disease statistics and doing research, as well as for insurance companies to qualify for coverage.
Getting insurance coverage could change the lives of many families
Feeding Matters’ 2019 study on the economic effects of the condition found that 63% of families described the overall financial burden of their child’s “failure to thrive” diagnosis as moderate to significant, and another 10% described it as catastrophic. These costs include lost income when a parent is forced to stay home with a sick child, prescription formulas, and copays or out-of-pocket payments for therapy.
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As part of Feeding Matters’ advocacy, it’s also provided a toolkit that parents and physicians can use to help children with PFD. With the diagnosis’ relative newness, there’s work to be done to popularize these new fact sheets, screening questionnaires, and provider directories.
In addition, the American Speech-Language-Hearing Association has created guidelines for speech therapists, who often treat children with feeding and swallowing challenges. The organization is helping therapists use these new codes to assist parents in getting insurance coverage for their children’s appointments.
In October 2021, Easton became one of the first children in the US to be diagnosed with PFD. Now, some of the supplements he takes are covered by insurance, which greatly reduces the financial strain on his family. His mom is relieved, she said.
“It was important to us to have some framework as to how we can get our son some support,” Peterson said. Now, a team of therapists and doctors who understand PFD are working with Easton to slowly increase his tolerance of a wider variety of foods.
When I think about how my own daughter might have benefited from the diagnostic and treatment protocols of a PFD diagnosis, I grieve for the years we lost to constant feeding challenges, now that we found what was causing her poor weight gain. For families all over the world, this new, more accurate label may change lives, one meal at a time.
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