Appetite for Life
Mealtimes can be a source of tension for many families with young children. From cajoling finicky eaters to eat their broccoli to battling restless youngsters who simply refuse to sit at the table and finish their dinner, parents can face an uphill battle when it comes to feeding their children balanced meals every day.
However, while as many as 50 percent of children experience some degree of feeding difficulties, between three and 10 percent develop severe feeding disorders conditions serious enough to threaten their ability to consume enough varied nutrients for healthy growth. In children with disabilities, from prematurity and chronic medical conditions to developmental disabilities like autism, cerebral palsy, and intellectual disabilities, the occurrence of severe feeding disorders is often higher than 50 percent. Over time, these disorders can have serious consequences, including failure to thrive, developmental delays, behavioral problems, and strained parent-child relationships. Because severe feeding disorders can lead to dependence on tube feedings, children might begin to feel socially isolated, and the whole family can feel the economic impact of the more expensive tube feeding supplies.
For children with these severe conditions, Kennedy Krieger Institute's Pediatric Feeding Disorders Unit (PFDU) can have a tremendous, positive affect on a child's health and development. Part of the Institute's Feeding Disorders Continuum, the PFDU focuses on children whose feeding-related impairments require 24-hour nursing, medical supervision, and/or fluid intake. Like its continuum partners, an intensive day program and an outpatient feeding clinic, the PFDU strives to help children increase weight, intake by mouth, and all types and textures of food consumed while decreasing tube or bottle dependence, inappropriate mealtime behavior, and mealtime vomiting. The program has existed for over 15 years and is one of the first in the nation to take an interdisciplinary approach to treatment, combining gastroenterology, behavioral psychology, nutrition, social work, occupational therapy, and speech-language pathology.
This approach is key, say program leaders, because most children's feeding disorders have more than one cause. "There's a good paradigm called the biopsychosocial model that illustrates the sources of most feeding disorders," says Anil Darbari, M.D., a gastroenterologist and medical director of Kennedy Krieger's feeding programs. "For most children, it's a combination of structural and/or anatomical abnormalities such as strictures in the trachea or esophagus that prevent food from passing through; medical conditions such as problems with gastrointestinal motility, celiac disease, or allergies; and environmental variables such as their parent's response to their food refusal.
Let's say a child has severe gastroesophageal reflux disease (GERD). They begin to connect the idea of eating with getting sick, so eventually they refuse."
The longer the child refuses, the longer he or she goes without developing chewing and swallowing skills, which only complicates the problem.
That's what happened with Lexi Spence. Diagnosed with a brain stem tumor at six months old, Lexi endured multiple surgeries to remove the tumor, one of which resulted in some vocal cord paralysis. That paralysis affected Lexi's ability to swallow, so surgeons also inserted a g-tube when she was nine months old. After the surgeries, she went through three-and-a-half years of chemotherapy.
"The chemotherapy made her so sick that we assumed it was better to keep the tube in, even if her paralysis had gotten better," her mother Dawn Spence, says. "That way, we knew she was getting nutrients. When her chemotherapy finally ended, she was five years old and didn't know how to eat, but that was the least of our worries she was never even supposed to make it past five. Any time she tried to swallow anything other than water, she'd throw up. It was time for her to learn to eat."
Referred to Kennedy Krieger by her pediatrician, the Spences traveled to Baltimore from their home in Michigan. Once doctors determined that Lexi's paralysis had improved, she was admitted to the PFDU.
"For the first few days, they watched me try to feed Lexi, but she'd just turn away and start talking, or worse, throw up," recounts Spence. "Her tongue didn't know what to do with the food. And it was tough on her she lacks experience eating, and she has a life history of illness. She doesn't want to get sick anymore. Her oral aversions were so severe, the team set a goal for her to consume just 50 percent of her foods by mouth by discharge. They never expected the results they got."
For the next seven weeks, Lexi's behavioral psychologists watched carefully as she responded to different foods. They learned which toys Lexi preferred and allowed her time to play with them if she took the number of bites they requested. Occupational therapists and speech-language pathologists helped Lexi develop the strength she needed in her mouth and jaws to chew and swallow.
"One of the more unique aspects of our program is how data driven we are," explains Charles Gulotta, Ph.D., a behavioral psychologist and director of the PFDU. "We know exactly what's going on and how the child is responding to each change. We'll make it easy for them at first, asking them to take a couple bites then offering reinforcement. The object is to get them to trust food again. We've got to break that history of eating being an aversive event.
This is especially true of kids with underlying medical conditions we approach children with autism a little differently, since most of them can eat pretty well, but have strong flavor, color, or texture preferences. The battle's half-fought already we just need to use reinforcement to encourage them to try new foods."
This approach has generated considerable success, with 70 percent of patients consuming at least 75 percent of their nutrients by mouth at discharge.
"Her team was so persistent," Spence admits. "I had a hard time being assertive with her, because she's been through so much. But they really connected with her and figured out what makes her tick. She craves attention and praise; so, eventually, this process became exciting for her, and she just did better and better."
Throughout Lexi's admission, Spence watched her daughter's therapists carefully, picking up the techniques they used. Two weeks prior to Lexi's discharge, her mother began engaging in role playing with the therapists and, later, feeding Lexi with the team observing to demonstrate that she'd be able to keep up Lexi's feedings at home. By the time she was discharged, Lexi was consuming 100 percent of her nutrients by mouth although the food she consumes is more similar in texture to baby food than the solids most six-year-olds enjoy.
"Lexi's gained a lot of weight she's now in the seventh percentile for height and twelth in weight for her age group she wasn't even on the chart before and she has so much more energy," says Spence. "But the best part is, she gets to experience taste now. She knows she likes chocolate better than vanilla. And I know so much more is in her future."
Of course, one of the keys to Lexi's progress was her physical recovery the paralysis that affected her swallowing had already improved by the time of her admission. For children still facing medical concerns, healthy eating can remain a challenge.
Willie Burson entered the feeding program at two-and-a-half in February 2005, shortly after doctors had inserted a g-tube. Born six weeks premature and eventually diagnosed with a number of conditions including hydrocephaly, damage to his central nervous system, low muscle tone, a swallowing disorder, and severe gastric reflux, Willie couldn't eat anything by mouth. After eight weeks in the program, he still had a lot of trouble with vomiting. When his parents tried to continue the feeding techniques at home, he began aspirating into his lungs and developing pneumonia. He even had trouble keeping tube feedings down.
"It was really a nightmare," says his mother, Caroline Morton Burson. "He ended up in the hospital six times that year. Then, in January 2006, he had a procedure called a Nissen fundoplication that basically involves wrapping part of his stomach around his esophagus so food can travel down, but can't come back up."
Willie is still 100% tube fed, but the surgery has allowed him to make great strides in other therapy areas. He comes to Kennedy Krieger several times a week for speech-language pathology and occupational therapy. "Right now, he just can't physically eat as much as he needs," Burson notes. "But the therapy is focused so intently on his oral motor skills and giving him the strength he'll need to chew. He used to be so far behind, but now that he's getting the proper nutrition, it's really given him a jump start.
"Two years ago, I was told that Willie might never walk or talk. Now, he's in a preschool, is making friends, and is in a developmental soccer program," adds Burson. "The difference is amazing."