FEATURE — Summer 2005
   

 

Working Out New Hope for Children with Cerebral Palsy

Dr. Janice Brunstrom works with Kenner Heinisch at the Pediatric Neurology Cerebral Palsy Center. Founded by Brunstrom in 1998, the center now sees 2,000 patients.

Assistant Professor Janice Brunstrom applies a host of new medical therapies as well as a comprehensive approach to sports and strength training to help children with cerebral palsy become more active and independent.

By Diane Duke Williams

Janice Brunstrom has fought many battles in her life, but her greatest cause may be correcting common misconceptions about cerebral palsy.

These misconceptions include the following: • Cerebral palsy (CP) is hopeless; • Cerebral palsy means low intelligence; • Children with cerebral palsy do not need to stand; • Strengthening their spastic muscles will make them worse; and • Physicians cannot do anything about these children's vision problems.

"We didn't know how wrong we were about this group of disorders, because no one really paid attention to these kids—and no one thought about raising their abilities because they had CP," says Brunstrom, assistant professor of neurology and pediatrics and director of the Pediatric Neurology Cerebral Palsy Center at St. Louis Children's Hospital and Washington University School of Medicine. "But we've taken the lid off the expectations and said: 'You know what? All bets are off.'"

Cerebral palsy, which is a combination of disabilities caused by an injury to the developing brain, usually before birth, occurs in two of every 1,000 live births. People with cerebral palsy always have trouble moving and often have problems walking or talking.

Brunstrom started the Pediatric Neurology Cerebral Palsy Center in 1998, simply with a box of business cards and an idea that there had to be better ways to treat children with CP and help them achieve their potential.

Today, the center sees approximately 2,000 patients and has a team of experts, which include neurologists; nurses; occupational, physical, and speech therapists; and a sports therapist. Patients may be seen by an orthopaedic surgeon, a neurosurgeon, an epilepsy specialist, a pediatric ophthalmologist, a stroke and language expert, a neuropsychologist, and consultants in mobility and custom bracing.

The Carol and Paul Hatfield Cerebral Palsy Sports Rehabilitation Program, at the Pediatric Neurology Cerebral Palsy Center, offers basketball classes, dancing, martial arts, swimming, tennis clinics, and both winter and summer sports camps. "One of the biggest ways to get these kids more aerobically fit and stronger is getting them involved in sports," says Assistant Professor Janice Brunstrom.

Patients at the center may receive levodopa, an old Parkison's drug also used to treat dystonia, which is common in kids with CP. They may undergo eye surgery for vision problems never addressed, or have their epileptic seizures treated aggressively for the first time. Other surgical interventions to help these children include orthopaedic procedures and specialized neurosurgical approaches, including selective dorsal rhizotomy and intrathecal baclofen pump.

Edwin Trevathan, professor of neurology and pediatrics, says Brunstrom has developed the largest CP center for children in the country in a very short period of time.

"People have listened to her because she's absolutely passionate about CP," says Trevathan, also director of the Division of Pediatric and Developmental Neurology as well as the Pediatric Epilepsy Center, at the School of Medicine. "There's no telling her no, and she doesn't give up."

In addition to trying a host of new medical therapies in children with CP and measuring their outcomes, the center offers a comprehensive approach to care that includes sports, physical fitness, and strength training to help children become independent and active adults.

Brunstrom, who has cerebral palsy herself, stresses that physical fitness is essential in people with the condition. Chronic pain, fractures, scoliosis, and hip dislocation are all side effects of immobility and insufficient types of exercise.

An avid swimmer and martial arts expert, Brunstrom established a sports rehab program that has become the Carol and Paul Hatfield Cerebral Palsy Sports Rehabilitation Program, at the center.

The Sports Rehabilitation Program offers dancing, martial arts, swimming, basketball classes, tennis clinics, and both winter and summer sports camps.

"One of the biggest ways to get these kids more aerobically fit and stronger is getting them involved in sports," Brunstrom says. "The goal is to make any sport accessible—I want there to come a day when they can choose any sport and make fitness a lifestyle."

Paula Shumpert brought her 7-year-old son, Marcos Rendon, to see Brunstrom last year. Marcos is unable to feed and dress himself and uses a walker to move. Brunstrom worked up a program for Marcos and gave the mother and son something they didn't have before, "hope." "Dr. Brunstrom said she wanted Marcos to ride his special bike as much as he could, go swimming, and attend the summer camp the center has," Shumpert says. "I couldn't believe it when she told us all this. I left the center so happy, crying."

Marcos now attends dance classes after school on Mondays, swimming classes after school on Thursdays, and martial arts classes on Saturdays. His mother said his speech and endurance have greatly improved, plus his rigidity has lessened because he's taking levodopa.

"He likes it all," Shumpert says. "His confidence is better, and he's really happy. This is a miracle."

"...  I want there to come a day when they can choose any sport and make fitness a lifestyle," says Brunstrom.

When Brunstrom was born in Seattle three months early, on October 29, 1962, her parents were told she had no chance of surviving. And if she did live, doctors said, Brunstrom would not be able to walk or talk and would be mentally disabled.

Brunstrom spent her early years with her family in London, then Perth, Australia. Her father is a civil engineer, and her mother a reading teacher. She has three brothers and one sister. Returning to the Seattle area when Brunstrom was nearly 7 years old, her parents struggled to find appropriate education and therapy in a school system that, until then, hadn't mainstreamed kids with disabilities.

After going to court, Brunstrom's parents enrolled her in a public elementary school where therapy services were offered in a building connected by a walkway. She was placed in fourth grade because of her advanced abilities, but her teachers still treated her differently, forcing her to nap while classmates didn't.

She graduated from high school at age 16 as valedictorian of her class. Following college at Pacific Lutheran University, she graduated from the Medical College of Virginia, with plans to become a pediatrician.

But after a fellowship in pediatric neurology at the School of Medicine, she tried her hand at neurology research in the lab of Professor Alan L. Pearlman, and was hooked.

In addition to investigations of dystonia and its treatment in CP, her clinical research also focuses on strength-training  programs to change gait in children with CP, and on understanding sensory abnormalities and how they correlate with movement problems, all in conjunction with physical therapist Diane Damiano, research associate professor in neurology.

"Traditionally physicians and therapists have viewed CP as a static problem in which aggressive clinical care makes little difference. Jan realizes that cerebral palsy is a dynamic condition, in spite of the brain lesion remaining stable," Trevathan says. "She and her CP center staff have shown that creative clinical programs, community initiatives, and research can improve the lives of children with CP. I think within the next decade there will be CP centers modeled after Dr. Brunstrom's vision of CP care all across the United States."

Diane Duke Williams is a free-lance writer based in St. Louis.