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Prader-Willi Syndrome Treatment Information
IU Health Medical Genetics physicians and support staff collaborate on a multidisciplinary program that includes nutritional monitoring, physical and hormone therapies, behavior modification and other treatments to help you improve your child’s quality of life.
- Nutrition. Infants with Prader-Willi Syndrome may need special nipples or assistance with feeding. When the drive to eat kicks in between age 2 and 4, a lifelong struggle to prevent constant consumption begins. A registered dietitian recommends proper calorie intake needed for your child to grow and remain healthy. You should lock refrigerators and cabinets containing food to prevent food hoarding and rapid weight gain. This helps prevent obesity. Monitor your child’s height, weight and body mass index (BMI) regularly.
- Behavior management. Restrictive diets can cause your child to experience anxiety and obsessive-compulsive behavior because your child’s brain keeps pushing him or her to seek food. Your child may also be angry and stubborn. Psychological therapies can help your child feel better.
- Antidepressants. These medicines can reduce your child’s feelings of anxiety and obsessive-compulsive behaviors.
- Growth hormone therapy. The U.S. Food and Drug Administration approves the use of growth hormone therapy to treat Prader-Willi Syndrome. An endocrinologist works with you and your child. Most children with the condition are growth hormone deficient, which makes them smaller and less able to burn calories. This treatment helps improve strength and height, and increase muscle mass, stamina and bone-mineral density.
- Physical and occupational therapy. Teaching your child to build strength in the bones and muscles can help control weight and result in a more comfortable life.
- Sex hormone replacement. Children with Prader-Willi Syndrome often have low levels of sex hormones. Replacing the hormones can bring about development of secondary sex characteristics.
- Sleep studies. The use of growth hormone therapy and being obese can contribute to serious sleep and breathing problems, including sleep apnea. Annual sleep studies are recommended for children with Prader Willi Syndrome.
- Clinical social workers. These professionals are vital to managing your child’s care. Social workers assist you in making the right accommodations for your child at school, and in adulthood, at group homes. They provide access to disability services for your child through Medicaid waivers.
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Prader-Willi Syndrome Support Services
Learn more about Prader-Willi Syndrome treatments at these websites:
A Sampling of Prader-Willi Syndrome Support Services
Genetics Home Reference
This is the National Library of Medicine’s website for consumer information about genetic conditions like Prader-Willi Syndrome, and the genes and chromosomes related to those conditions.
Eunice Kennedy Shriver National Institute of Child Health and Human Development
This National Institutes of Health division provides information on treatments and clinical trials for Prader-Willi Syndrome and other conditions that impact the process of human development.
Prader-Willi Syndrome Association
This association provides research and family-support services to people and their families living with Prader-Willi Syndrome. Bryan Hainline, MD, clinical and biochemical division director at Indiana University School of Medicine, serves on the group’s clinical advisory board.
Indiana University Molecular Genetics Diagnostic Laboratory
This lab within IU School of Medicine provides testing to diagnose Prader-Willi Syndrome.