Until such time as a medication is developed, maintaining food security is a life long need for individuals with PWS. Adults must continue to have their food intake monitored and controlled by their parents or caretakers. We encourage the continued strategies as outlined in our food management section for young children, as the same methods apply throughout life: a regular food schedule, controlled portions, restricted food access, and a healthy diet.
As noted in our section for young parents Prader-Willi California Foundation also highly recommends following the Principles of Food Security developed by PWS specialists Drs. Janice Forster and Linda Gourash. An overview of their Principles of Food Security is found here and applies to all ages.
Families and professional providers must work together to ensure that the concepts of “Food Security” are consistently enforced. If your adult child lives in a group home or supported living setting the care providers there must be educated on these concept, as should vocational, recreational and day program providers. Parents should be diligent about maintaining appropriate diet plans when their adult child who live outside the family home come home for family visit because not only is the a frequent time for weight gain and serious illness or death, these changes in Food Security create anxiety and frequently result in unwanted behavior problems.
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PWCF has a host of parents to support and help guide you, in-person share and support groups, and links to online support groups. Click Here for Individual Support and Support Group information . You never need to feel alone.