Self-management

Tips to help you take care of your loved one with Prader-Willi syndrome include the following:

  • Learn about Prader-Willi syndrome. Managing hormone levels and weight can improve development and behavior and prevent complications. Work with your health care team to develop a plan of care for managing symptoms and addressing issues.
  • Stick to a strict meal plan. Eating a low-calorie diet is essential to keep your child from becoming overweight. Structure mealtime and the type of food to help develop routines and to help your child understand expectations. Use small dishes for serving meals. To help prevent binging, avoid buying high-calorie snacks. Store food out of your child's reach. Lock pantries, refrigerators and cupboards.
  • Encourage regular daily activity. Increasing physical activity and exercise can help manage weight and improve physical functioning.
  • Set limits. Create a firm schedule and set expectations for managing behavior. If needed, talk to your health care team about ways to address problems.
  • Schedule regular medical care. Talk with your doctor about a regular schedule of health appointments and tests to check for problems or complications related to Prader-Willi syndrome.

Having a child with Prader-Willi syndrome is challenging and can take a lot of patience. Managing eating problems, behavior and medical issues can impact the whole family.

Some options for coping and support can include:

  • Talking to a mental health professional. If you're having trouble coping or feel overwhelmed, talk to a mental health counselor or therapist.
  • Joining a support group. Some people find it helpful to talk with others who share similar experiences. Ask your health care provider about family support groups in your area. Organizations such as the Prader-Willi Syndrome Association provide resources, support groups and educational materials.
  • Seeking other sources of support. Options for additional support can include asking about sources of respite care, asking for support from family and friends, and taking time for your own interests and activities.

If you have a child with Prader-Willi syndrome and would like to have another baby, consider seeking genetic counseling. A genetic counselor may help determine your risk of having another child with Prader-Willi syndrome.