Pediatric Feeding Disorders Program’s Inventive Approach Allows Families to Thrive
Kennedy Wolf is a 6-year-old with Down syndrome who has always had trouble gaining and maintaining weight. Kennedy’s mother, Tammy, says it dates back to her stay in the neonatal intensive care unit at Golisano Children’s Hospital. In her first 72 days, she had gained just three ounces of weight.
Six years later, Kennedy is still facing eating challenges.
“Kennedy isn’t particularly a picky eater. Rather, she gets tired of chewing and tries to swallow everything she eats before it’s fully chewed,” said Tammy. “She’ll eat anything. How can we make sure she doesn’t choke on it?”
Picky eating and building proper eating habits has long been called a “normal rite of passage” for most toddlers. Structuring a child’s eating routine so that they are getting proper nutrients is tough enough for the average baby, but for families that have a child with a developmental disability, it can be much more difficult.
Nearly 75 percent of children diagnosed with a developmental disability have some type of feeding disorder. Most children with Autism Spectrum Disorders, Down syndrome, and other developmental disorders who have problems feeding fear new foods and often have a preference for certain brands. Children who are extremely selective run the risk of having nutrient deficiencies. Selective eating that is not treated can remain a lifelong challenge.
Five years ago, the Feeding Disorders Program - part of the division of Developmental and Behavioral Pediatrics - was started at Golisano Children’s Hospital as a way to help children and families evaluate their child’s nutrition, feeding behaviors and chewing/swallowing skills, and help them get on the path to eating in an age-appropriate way. They see children ages 1-10 years old who have feeding problems such as very selective eating, refusing certain foods or liquids, disruptive mealtime behavior, difficulty chewing or swallowing, or fear of choking. They also see children with complex medical conditions. These are all areas the team in the Pediatric Feeding Disorders Program aims to help.
“The interdisciplinary nature of our clinic allows for collaboration between our dietitian, speech therapist, social worker, nurses, and doctors,” said Kimberly Brown, Ph.D., director of the Pediatric Feeding Disorders Program. “We provide a full nutritional analysis for patients and provide an individualized plan for parents to teach their children better eating habits.”
The Pediatric Feeding Disorders Program is typically six to eight weeks of weekly or biweekly appointments, where families practice sitting for a meal and go through many of the interactions associated with eating. If a child has a really hard time trying new foods, they may begin by teaching the child to learn to interact with new foods before committing to eating it.
Kennedy started attending the Feeding Disorders Clinic about eight months ago. She has worked with Dr. Brown, speech therapist Katherine Maruska, and registered dietitian Brianne Schmidt. Katherine assisted in identifying safe and appropriate textures that Kennedy could eat, monitoring her chewing and swallowing skills while assisting with her self-feeding.
“The overall goal was to realize what she could safely eat and how to introduce new foods into her diet,” said Tammy.
The team at the Pediatric Feeding Disorders Clinic ran blood work on Kennedy to see what nutrients she was lacking in her current diet. When Tammy and Brianne went over the results, they discovered that Kennedy was lacking Vitamin D and iron, so she is now on supplements for those nutrients.
“Every visit, I had a homework assignment to bring in a different food to evaluate and see how Kennedy was maneuvering with her food,” Tammy said. “The overall nature of the clinic allowed us to see multiple specialists per visit, so the collaborative nature really benefited Kennedy.”
And that collaboration is about to get better. When the Pediatric Feeding Disorders Program makes their move to the new space on East River Road, providers from Developmental and Behavioral Pediatrics, Child Neurology, and Psychiatry will be co-located. The clinic will have a fully stocked kitchen, which will allow families to be comfortable in an environment that looks more like their own home.
“We want kids engaged in cooking and meal prep,” Brown said. “The new area will have two rooms directly next to each other, each with observation areas. Our ultimate goal is to make home life be similar to their appointments in our clinic.”
Patients will also benefit from having other providers sharing clinic space in addition to their developmental pediatrics team.
The Feeding Disorders Clinic will begin seeing patients in the Neuromedicine and Behavioral Health center in early April.