Lexi's Story

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 Pediatric Feeding Disorders Program.

"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, PhD, a behavioral psychologist and director of the Pediatric Feeding Disorders Program. "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."

Story by Courtney Jolley. Reprinted from Potential, Fall 2006

 

For a complete overview of our Feeding Disorder Program, please visit the Pediatric Feeding Disorders Program homepage.

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