The Life Expectancy of a person with Prader Willi Syndrome is high.
What is Prader-Willi Syndrome?
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 as he or she begins to grow.
* 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 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. 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; occupational therapy to learn everyday skills; and developmental therapy to learn age-appropriate behaviors, social skills and interpersonal skills. 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 any psychological problems your child may have, such as obsessive-compulsive disorder or a mood disorder. Some children may need medication to control behavioral problems.