Autumn 1999
Volume 1, Issue s

Contents:


NAGCPP Makes Its Debut!


Does Your Child Have Difficulty Eating or Growing?


Transfer

NAGCPP Makes Its Debut!
By Vivienne Spauls

Investigators, (undaunted by hurricane Floyd!) presented their first findings from NAGCPP research at the AACPDM 53rd Annual Meeting in Washington, DC in September.

Gregory S. Liptak, MD, was the moderator of these talks and is the Rochester site investigator. He talked about the health status of children who have moderate to severe CP and are enrolled in our collaborative, multi-centered, population based study. These children were judged to have less behavior and mental health problems but worse global health status and physical functioning. In addition, caregivers reported higher emotional toil and time commitment to their child with CP.

Lisa Samson-Fang, MD, the investigator at our new site at the Primary Children¹s Hospital, in Salt Lake City, Utah, answered our questions about how nutritional status impacts the health in children with moderate to severe CP. We found a high prevalence of low body fat and muscle mass. She also won the Richmond CP Award for her work: Identification of Malnutrition in children with CP: Poor performance of NCHS weight for height percentiles, of which Richard D. Stevenson, MD, of KCRC, at UVA is co-author. He is also principal investigator of NAGCPP.

Ellen B. Fung, PhD, RD, of Univ. of PA., presented her findings on feeding dysfunction with regard to nutritional status and health in children with CP. 26% currently use a G-tube for feeding and 44% have used tube feedings in the past. Children with G-tubes were bigger and taller than similar children without feeding tubes.

Gordon Worley, MD, of Duke Univ., shared our findings on sexual maturation in children with CP. Data suggests that children with CP begin and progress through puberty differently than the general population, beginning earlier but ending later. Girls tend to achieve menarche, (get their period,) later than the general population. We found that inadequate nutrition contributes to a slower completion of puberty.

The overall response to NAGCPP was extremely positive, as seen by all the questions and comments following each talk. The number of email messages and hits on our Website are evidence that this project is of high interest world wide! I am proud to be one of the many people that are genuinely interested in continuing to find ways to help children with CP.