Early diagnosis and treatment can improve quality of life for a person with Prader-Willi syndrome. A team of health professionals will likely work with you to manage the condition.
Most children with Prader-Willi syndrome will need the following care and treatments:
- Good nutrition for infants. Many infants with Prader-Willi syndrome have difficulty feeding due to decreased muscle tone. Your child's health care provider may recommend a high-calorie formula or special feeding methods to help your baby gain weight and will monitor your child's growth.
- Human growth hormone treatment. Human growth hormone (HGH) stimulates growth and influences the body's conversion of food into energy (metabolism). Growth hormone treatment in children with Prader-Willi syndrome helps increase growth, and likely improves muscle tone and decreases body fat. Long-term effects of HGH 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 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 usually starts when your child reaches the normal age for puberty and can help reduce your child's risk of developing thinning of the bones (osteoporosis).
- Healthy diet. As your child gets older, a dietitian may help you develop a healthy, reduced-calorie diet to keep your child's weight under control while ensuring proper nutrition. Restricted access to food and strict supervision of food intake may be required.
- Treatment of sleep disturbances. Treating sleep apnea and other sleep problems can improve daytime sleepiness and behavioral issues. A sleep evaluation should be done before starting growth hormone treatment.
- 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 occupational therapy to learn everyday skills. Developmental therapy to learn age-appropriate behaviors, social skills and interpersonal skills also may help. 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 — for example, obsessive-compulsive behaviors 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.
As your child approaches adulthood, consider these strategies:
April 17, 2014
- Find local resources and services through organizations such as the Prader-Willi Syndrome Association
- Investigate guardianship issues and wills regarding future care and supervision for your child
- Talk to your child's health care provider for suggestions about making the transition to adult medical care
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