International Physician Update

Kennedy Krieger: Hope for Children with Complex Disabilities

A mother in Florida recently experienced the heartache of having to deal with a young child with a serious medical condition. Her two-year-old daughter, whom we’ll call Anna, had a history of reflux. When the mother tried to introduce Anna to solid foods, she stopped
eating altogether and had to go on a nasogastric feeding tube
to survive.

Desperate for help, the mother was told about the Kennedy Krieger Institute (KKI). The mother discovered that many KKI physicians have joint appointments at Johns Hopkins and, therefore, are able to keep current with cutting-edge medical developments.

Armed with that important information, the mother concluded that making the long journey to Baltimore was a nobrainer. She hasn’t regretted that decision for a nanosecond. Indeed, KKI is used to difficult cases. “We estimate that approximately 25 to 40 percent of normal children have some kind of feeding problem when they are very young,” says psychiatrist Charles Gulotta, director of the Feeding Disorders Program at Kennedy Krieger. “In mentally and physically challenged children, such as those with cerebral palsy, autism or Down Syndrome, that percentage goes up to 80 percent.”

Many of those children, adds Gulotta, who also is a faculty member in the Department of Psychiatry at the Johns Hopkins School of Medicine, have pain-related issues with food as infants. And some,
like Anna, have reflux, associate eating with a very unpleasant
feeling and then start to refuse food to the point where it affects
their normal growth.

To deal with those complex problems, KKI has implemented a multidisciplinary approach. For example, says Gulotta, “the Feeding Disorders team works with a group of specialists to treat any medical condition, and also tries to reverse any negative emotional history the child may have so they can create a whole new association with the act of eating.”

Affiliated with Johns Hopkins since 1961, KKI has more than 40 inpatient and outpatient programs, including a Behavior Management Clinic, a Center for Autism and Related Disorders, a Down Syndrome Clinic, a Neurogenetics Clinic, and a Speech and Language Clinic. And KKI recently added neurologist John McDonald to its faculty, which will enable it to further develop clinical care and research in spinal cord injuries.

“We set up very realistic goals with the parents, especially because
many children we see have severe medical conditions. Even when the goals are not very optimistic, the parents leave the Institute knowing we tried everything possible,” affirms Gulotta.  As a research and teaching institution, KKI also trains qualified specialists in the United States and abroad through fellowships in collaboration with children and maternal health agencies, and offers research training in brain injury rehabilitation.

More than 400 professionals from all academic levels participate
in the Institute’s training programs each year. Indeed, KKI’s research and treatment capabilities proved fruitful for Anna. Following a customized program based on careful data analysis and observation, she was discharged from Kennedy Krieger after only eight weeks. Now, according to her mother, Anna is 75 percent free of her feeding tube. KKI doctors and nurses are providing the family with follow-up advice through e-mail and phone, and over the next months, they expect that Anna will be 100 percent tube-free, playing and growing
like a normal child again.