The PWS characteristics of over-eating (hyperphagia) and low muscle tone (hypotonia) mean that weight can be gained very easily by both children and adults with PWS, although in the very early months of life, babies with PWS may struggle to feed and gain weight. However, with good dietary management and restricting access to food, weight can be kept within normal levels for both children and adults.
The following links are sections from the PWS Journey. Families can obtain a hard copy of the whole PWS Journey, which is updated as their child reaches the next age range, by becoming a member of PWSA UK
Feeding and weaning your child
Understanding why a person with PWS needs to keep to a lower calorie diet, as well as knowing some of the basic principles of good nutrition, are crucial to helping the person maintain a healthy body weight.
The first part of this book explains what is unusual about PWS and how good dietary management can help maintain a healthy weight for people with the syndrome. It includes sections on eating healthily as well as managing the food environment. In the second part there is a range of delicious, healthy, lower calorie recipes which everyone will enjoy.
Others source of information about dietary management
Need to know Nutrition for children with Prader-Willi Syndrome – Children’s Nutrition Research Centre , University of Queensland
The Red Yellow Green System (RYG) for Weight Management – for individuals with Prader Willi Syndrome- Ontario Prader-Willi Syndrome Association
Exercise and Physiotherapy
Exercise is very important for both children and adults with PWS. It helps burn calories as well as improving muscle tone. Infants and young children with PWS are often offered physiotherapy to help develop their muscles. The links above for dietary management also contain some information about exercise, as does the following:
Exercise and Physical Activity for Children with Prader-Willi Syndrome – Children’s Nutrition Research Centre, University of Queensland
The PWS Passport can be used to inform others working with or caring for your son or daughter about their needs - you can adapt it to fit your personal circumstances.
You can download it here
If you have a question about dietary management which is not answered in the links above, please contact us.