A team of health professionals will likely work with you to manage your child's condition. Most children with Prader-Willi syndrome will need the following care and treatments:
- Good infant nutrition. Many infants with Prader-Willi syndrome have difficulty feeding due to decreased muscle tone. Your child's doctor may recommend a high-calorie formula to help your baby gain weight and will monitor your child's development.
- Growth hormone treatment. Human growth hormone stimulates growth and influences the body's conversion of food into energy (metabolism). Some studies have suggested that growth hormone treatment in children with Prader-Willi syndrome helps increase growth, improve muscle tone and decrease body fat, but the long-term effects of growth hormone treatment aren't known. A doctor who treats hormonal disorders (endocrinologist) can help determine whether your child would benefit from growth hormone treatment.
- Sex hormone treatment. Your endocrinologist may also suggest that your child take hormone replacement therapy (testosterone for males or estrogen and progesterone for females) to replenish low levels of sex hormones. Hormone replacement therapy can help decrease your child's risk of developing thinning of the bones (osteoporosis).
- Healthy diet. As your child gets older, a nutritionist may help you develop a healthy, reduced-calorie diet to keep your child's weight under control while ensuring proper nutrition.
- Overall development. Your child will likely benefit from a range of therapies, including physical therapy to improve movement skills and strength, speech therapy to improve verbal skills and articulation and occupational therapy to learn everyday skills. Developmental therapy to learn age-appropriate behaviors, social skills and interpersonal skills may also be helpful. In the United States, early intervention programs providing these types of therapy are usually available for infants and toddlers through a state's health department.
- Mental health care. A mental health professional, such as a psychologist or a psychiatrist, may help address psychological problems your child may have, such as obsessive-compulsive disorder or a mood disorder. Some children may need medication to control behavioral problems.
Other treatments may be necessary depending on the specific symptoms your child has or complications that develop.
Transition to adult care
Most people with Prader-Willi syndrome will need specialized care and supervision throughout their lives. Many adults with the disorder live in residential care facilities that enable them to eat healthy diets, live safely, work and enjoy leisure activities.
Organizations, such as the Prader-Willi Syndrome Association, can help families find local resources and services.
Also, talk to your child's doctor for suggestions about making the transition to adult medical care.
May. 01, 2013
- Cassidy SB, et al. Prader-Willi syndrome. European Journal of Human Genetics. 2009;17:3.
- Prader-Willi syndrome. Genetics Home Reference. National Library of Medicine. http://ghr.nlm.nih.gov/condition/prader-willi-syndrome/show/print. Accessed Feb. 23, 2011.
- Scheimann AO. Clinical features, diagnosis, and treatment of Prader-Willi syndrome. http://www.uptodate.com/index.html. Accessed Feb. 15, 2011.
- McCandless SE, et al. Health Supervision for Children With Prader-Willi Syndrome. Pediatrics. 2011;127:195.
- Cassidy SB, et al. Prader-Willi Syndrome. In: Pagon RA, et al., eds. GeneReviews. Seattle, Wash.: University of Washington; 1993. http://www.ncbi.nlm.nih.gov/books/NBK1330/. Accessed Feb. 23, 2011.