Before Shannon and Bill Jones were referred to the intensive feeding program at UI Children’s Hospital, the only thing their son Henry, 3, would eat was a bottle of PediaSure. When the family first came to the program in March 2011 Henry was taking in seven to eight 4-ounce bottles of the nutritional supplement a day.
Henry, who is also diagnosed with autism spectrum disorder, now eats food, little by little, and is working on drinking his PediaSure from a no-spill cup rather than a bottle. Working with Linda Cooper-Brown, Ph.D., clinical assistant professor of pediatrics with UI Children’s Hospital’s division of pediatric psychology, Shannon and Bill are learning techniques to improve Henry’s eating and to get him off the bottle and on to eating solid foods.
Cooper-Brown leads the Pediatric Feeding Disorders Service at UI Children’s Hospital, which is the only one of its kind in Iowa and one of just a handful in the Midwest.
Referrals from Across the Country
Cooper-Brown works with young children, typically up to six years old, from as far away as Idaho, Maine and Washington as well as all of the surrounding states, who for one reason or another don’t take in food normally. Many of the children are still being fed through a gastric tube (G-tube), she said.
“There are medical issues that may keep them from eating, severe gastrointestinal problems that can’t be overcome so easily, for instance,” Cooper-Brown said. “Any kind of significant medical event could have prevented them from taking food in normally, but once the medical event is resolved, many children still don’t eat normally.”
An Intensive Program
The program starts with an initial one-hour visit and consultation so staff members can assess each child’s feeding and oral-motor skills and obtain feeding histories as well as determine which treatment would work best. For children whose needs don’t match the intensive program but who may still benefit from the program’s expertise, there is a brief therapy session of two to three hours where the program’s staff work with the child and provide information and advice to help families overcome feeding problems.
The intensive outpatient therapy, Henry’s kind of therapy, is a more directed program that entails daily sessions of two to three hours for about 15 days. The first few days involve measuring the child’s feeding skills, food acceptances and food refusals. Treatment focuses on specific skills and behaviors to introduce eating based on the child’s age, skills, and level of food refusal--the child may be tube-fed only or might drink from a bottle, like Henry.
Cooper-Brown and her staff typically work with about 12 children each year, in part, she said, because of the intensity of therapy and not a lot of people are aware that the program exists.
Providing an Alternative to G-tubes
She said that in many cases families work on their own or with local therapists to try to get their child to eat. At the same time, the families typically are working with pediatric gastrointestinal specialists, who refer the family to Cooper-Brown and the intensive feeding program.
That’s how Shannon and Bill Jones learned of the program. Shannon said Henry was just weeks away from having a G-tube put in when they were referred to Cooper-Brown.
“It’s the worst feeling ever. All you want is for your baby to eat, for him to be happy and healthy and full,” Shannon said. “I just feel so fortunate that there’s someone we can go to, someone who understands and can help.”
While medical events can certainly lead to feeding disorders, Cooper-Brown said there are other factors that can contribute, as well. Some children may have difficulty with their oral motor skills which may lead to difficulty chewing and swallowing. Henry and his twin brother were born two months early and were fed through a feeding tube for at least two months. Although twin Hayden adjusted to regular foods, Henry would only drink PediaSure from a bottle and refused to eat for three years.
“If kids don’t go through that normal progression of nursing to bottle to feeding, it gets more difficult,” she said. “When they’re five or six months old and they’re being fed baby food it really isn’t for nourishment, it’s for experimenting, getting them used to different tastes and textures.”
“If they haven’t gone through that sequence, a number of kids seem to not get it,” she said.
Several Conditions Indicate This Type of Treatment
For many, however, the feeding disorder can be linked to developmental delays--the child is often behind in other areas of development in addition to eating. Cooper-Brown said about two-thirds of the children she works with have other developmental delays with an increasing number of children who are falling somewhere on the autism spectrum.
It’s one reason, Cooper-Brown said, that rather than treat the issue as a psychological one, she and her staff work with the children and their families on the acts of eating and feeding, teaching the children how to take food in and swallow, and showing parents and caregivers how best to introduce foods and help their children eat.
“Our goal is to reduce the refusal,” Cooper-Brown said. “We don’t expect that we’re going to get them to eat everything throughout this program. It’s a jumpstart; our long-range goal is to get them off that tube or bottle and eating normally. In the past four years, 92 percent of our patients have had reduction in refusals and 83 percent have had reductions in tube feedings following our program.”