University of Virginia Health System

U.VA. RESEARCHERS PRESENT NEW FINDINGS ON CEREBRAL PALSY

Dr. Richard Stevenson, principal investigator of the North American Growth in Cerebral Palsy Project at the U.Va. Kluge Children's Rehabilitation Center (KCRC), recently presented the study's newest findings at the September annual conference of the American Academy of Cerebral Palsy and Developmental Medicine in Washington, D.C.

When you spend each day of your childhood in a wheelchair, unable to feed yourself, you have a whole different growth pattern from that of able-bodied children, Stevenson said. Separate standards of measurement are needed.

For example, using standards for able-bodied children, 40 percent of U.Va.'s 80 study subjects were found to be undernourished, Stevenson said. However, their nutritional needs are different. Although they are thinner and shorter than other children their age, that might be an advantage for them because they are better able to receive therapy.

We're trying to find the best methods of providing nutrition for developing their skills, ability to learn, and muscle strength. We also want to make the feeding routine easier, help parents worry less, and make kids healthier so they don't miss as much school, he said.

Those goals are being realized. Sylvia Kingrea was diagnosed with CP when she was 7 months old. She has been a part of the KCRC study since its inception. Now 12, she attends William Monroe Middle School and has maintained pace with her class despite being a wheelchair user.

Sylvia's mother, Lisa Kingrea, said, The study has given us ways to feed her, such as special high-calorie and high-vitamin drinks, that helped put some weight on her and made a difference in her overall health. She has had fewer upper respiratory tract infections, so I think it's strengthening her immune system. That's made her miss less school.

Kingrea also said she is glad for the detailed measurements the study provided because Sylvia can't stretch out to her full height on conventional measuring equipment.

The U.Va. researchers also found that inadequate nourishment also contributes to slower completion of puberty. Puberty generally starts on time but lasts longer in children with CP, Stevenson said. Scientifically, it raises a lot of questions about hormonal differences and what the control mechanisms are. On a practical level, it can help reduce parents' anxiety by helping them know what to expect.

Cerebral palsy (CP) affects approximately 1 in 500 children in the United States. It is caused by abnormal development of the nervous system and muscles because of brain injury due to premature birth, infection or insufficient oxygen to a fetus. It affects a child's ability to move and maintain posture and balance, and may include mental retardation, seizures, language disorders, and vision and hearing problems.

The National Institutes of Health funded the study in 1997. To date it has enrolled 235 children, and U.Va.'s Kluge Center is studying 80 of them. Separate standards of measurement may be needed for children with CP, Stevenson said, and this kind of broad-based study is the only way to see that.

U.Va. leads the project's research at six other sites: Duke University, University of North Carolina at Chapel Hill, Children's Hospital of Pennsylvania, University of Rochester in New York, McMaster University in Ontario and Sunny Hill Health Center for Children in Vancouver. The study will track enrolled subjects for the next several years, and other sites in Western states are expected to be added.

The part that is most gratifying is that the families are happy we are studying this, Stevenson said. They've been asking these questions for years, and now we may have some answers for them. We've had a very good experience doing this.

More information about the North American Growth in Cerebral Palsy Project is available at its Internet Web site, http://www.people.virginia.edu/~mon-grow/, or call 1-888-4CP-GROW.

October 15, 1999