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Children With Prader Willi Syndrome:Parents’ Perspective of The Mamagement of Food and Diet in the School System

Journal of the American Dietetic Association
Publication Date
DOI: 10.1016/s0002-8223(98)00469-6
  • Tuesday
  • October 20
  • Education
  • Medicine


Abstract The purpose of this study was to explore the parents’ perspective of food and diet management for their child with Prader Willi Syndrome (PWS) in the school environment. Parents of 31 individuals with PWS completed a questionnaire about their child's height and weight history, age of diagnosis, early nutritional concerns, current food management at school, support from school staff, professional help, and inclusion of nutrition in their Individualized Education Plans (IEP). The individuals who were diagnosed with PWS before one year of age had more appropriate Body Mass Index's (BMI), better supervision at school, less problems in school, and followed modified diets than those diagnosed after one year of age. Many children in preschool and kindergarten did not have lunch at school and had BMIs less than the 90th percentile. As the children got older, however, it became harder to control their food intake at school. Although the sample size was small, the majority of children who had supervision during lunch and class, nutrition objectives in their IEP, as well as help by a nutritionist demonstrated a trend of BMIs less than the 90th percentile. Based on the results of this study, the following recommendations were made: Parents need to be aware of (1) the availability of a modified school lunch as part of section 504 of the Federal Rehabilitation Act of 1973; (2) ways to incorporate nutrition objectives and food access objectives into their child's IEP; and (3) types of supervision that the school can provide for their child during lunch, class and between classes. In cooperation with parents and health care providers, school staff can: (1) modify the child's school breakfast and lunch to meet individual energy needs; (2) provide supervision for the children during lunch, class and between classes; (3) become more aware of the food related and educational needs of children with PWS; and (4) and ensure that food is not used as a reward in the classroom, and food is locked or stored outside of the classroom.

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