For many families, mealtimes can be a battle. Trying to get kids to try something outside the endless cycle of chicken nuggets and macaroni and cheese can feel like a never-ending negotiation. But while getting your kids to eat something of nutritional value is just a phase for many families, some parents are truly struggling to feed their children a proper meal.
Kids diagnosed with pediatric feeding disorder (PFD) can find chewing and swallowing food a painful experience. The Journal of Pediatric Gastroenterology and Nutrition defines the condition as the “inability to consume sufficient food and liquids to meet nutritional and hydration requirements.”
One in 37 children under the age of five have PFD, but those who are born premature, are on the autism spectrum, or suffer from muscular dystrophy or cerebral palsy are at high risk. PFD can also hinder a child’s development and well-being. If you’re unfamiliar with the condition, that’s because it’s only beginning to gain recognition among pediatricians.
“There is quite a bit of confusion in the medical community, as well as the community at large, about what a feeding disorder is,” says Cuyler Romeo, an occupational therapist and pediatric feeding specialist.
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PFD vs. picky eating
PFD is more than a child shoving the food on their plate away. It’s a disruption of their feeding process, making them unable to eat the same quantity or types of foods that other kids their age can eat. These symptoms could stem from severe food allergies, reflux, or difficulty transitioning from breastmilk to solid food.
According to Romeo, there are signs that parents and caregivers can look out for during mealtime to help them differentiate between picky eating or something more serious:
- Choking, gagging, vomiting, or coughing during feeding
- Refusing to eat or drink or displaying strict food preferences
- Trouble maintaining nutrition or hydration levels
- A child depending on one food type, such as bottles, purees, or snack foods
- Getting tired during feedings
- Not gaining weight or excessive weight gain
- A child refusing to come to the table for meals
- Parents and caregivers feeling stressed or overwhelmed
If symptoms are left untreated, they can progress to a disability. Some PFD cases are so severe that children are fed through a tube to get the nutrition they need to strengthen and grow. And according to Romeo, feeding children can still be challenging despite treatment of PFD symptoms.
“If swallowing food was scary or associated with pain of any sort, the child may learn that food hurts,” she says. “And once symptoms are managed, and a child can eat and swallow safely, they may have a delay in their feeding skills, and it can be difficult to progress to the next set of foods that they should be eating.”
How to get help
If you suspect your child may be suffering from PFD, Romeo recommends starting with an online questionnaire from nonprofit organization Feeding Matters. They developed the evidence-based tool with parents and doctors to help caretakers determine what behaviors are picky eating or possibly PFD.
After completing the questionnaire, email or bring the results to your provider to start a conversation about what your family’s next steps should be. And exercise patience with whomever you consult regarding your child’s symptoms, as both parents and doctors alike have just recently become more aware of the signs of PFD. However, Romeo urges parents to be unafraid to advocate for their child if they know something is wrong.
“The family may be the people bringing new information to the table,” says Romeo.
After your visit, Romeo encourages all parents to take a few moments to reflect on the consultation. Ask yourself if your concerns were heard and addressed by your pediatrician. Did you both map out a clear plan to move forward? If the answer is no, then continue to ask questions or seek out a second opinion.
“They might seek support from a dietician or receive an assessment from a feeding therapist to help identify if a child’s behavior is indicative of PFD,” she says. “The disorder covers the medical, nutritional, and psycho-social domains. Families can speak to professionals in any of those domains and express their concerns, equipped with the questionnaire.”
She also stresses that it’s okay to feel overwhelmed if your child receives a PFD diagnosis. Advocacy groups like Feeding Matters offer families resources and support, including coaching, webinars, and community events.
