- Seeing a child diagnosed with “stunting” can be painful for parents.
- There is a new diagnosis called pediatric eating disorder.
- It allows treatments, drugs, therapies and specialized formulas to be covered by insurance.
When my child’s doctor described her with the all-too-common diagnosis growth retardationI felt like he was telling me I had failed.
What I didn’t know was that “stunting” is neither a disease nor a disorder. It is a description of a child’s below-average growth chart, and it uniquely defines their inability to eat or retain enough calories.
It can be caused by other health conditions, but sometimes the problem is more difficult to identify, resulting from difficulties with eating skills, missed medical diagnoses, nutritional deficits or psychosocial problems. For these children, like mine, the nagging label of stunting lingers for years.
But now there’s a new diagnosis called pediatric eating disorder, and it allows families to get proper insurance coverage for what their children need to grow, whether it’s therapies or special formulas. With 20% neurotypical children and 80% children with developmental disabilities affected by PFDthe effect on families could be significant.
Many children are affected by a pediatric eating disorder
Like my daughter, Natalie Peterson’s son Easton struggled to eat solid foods as a baby and never improved.
“At first, our journey was a constant stream of doctors, procedures and diet therapists,” she said. She sometimes worried that Easton would never eat enough to grow or that he might end up with an expensive prescription formula forever.
Maddeningly, without a clear medical cause identified, insurance companies often refuse to pay for treatments or specialty formulas like Easton’s.
PFD is the brainchild of a non-profit organization called Food matters. In 2014, the organization set out to create clear diagnostic criteria for the condition, bringing together a global group of doctors to collaborate with the American Academy of Pediatrics and others on a consensus paper which led to the adoption of a new code for pediatric eating disorders.
The codes are used around the world to track and record disease statistics and perform research, as well as to help insurance companies qualify for coverage.
Getting insurance coverage could be life changing for many families
Food matters study 2019 on the economic effects of the disease found that 63% of families described the overall financial burden of their child’s “stunting” diagnosis as moderate to severe, and a further 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 copayments or out-of-pocket payments for therapy.
As part of Feeding Matters advocacy, it is also provided a toolbox that parents and doctors can use to help children with PFDs. With the relative newness of diagnosis, there is work to be done to popularize these new fact sheets, screening questionnaires and directories of providers.
Additionally, the American Speech-Language-Hearing Association created guidelines for speech therapists, who often treat children with eating and swallowing problems. The organization is helping therapists use these new codes to help parents get insurance coverage for their children’s appointments.
In October 2021, Easton became one of the first children in the United States to be diagnosed with a PFD. Now some of the supplements he takes are covered by insurance, greatly reducing the financial strain on his family. Her mom is relieved, she says.
“It was important for us to have a framework for how we can get support for our son,” Peterson said. Now, a team of therapists and doctors who understand PFD are working with Easton to slowly increase his tolerance to a wider variety of foods.
When I think of how my own daughter could have benefited from the diagnostic and treatment protocols of being diagnosed with PFD, I mourn the years we lost to constant dietary challenges, now that we have found what was causing his poor weight gain. For families everywhere, this new, more accurate label can change lives, one meal at a time.