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Multi-disciplinary management for PWS

The management and special needs of individuals with Prader-Willi syndrome (PWS) should be addressed as soon as the diagnosis is confirmed. A multi-disciplinary approach provided in a PWS Clinic is preferred when available. All PWS individuals regardless of their age will require:
  1. Nutritional services by a registered dietitian to help gain, maintain, or lose weight as needed. These services will be required throughout life.
  2. A physical therapist will assist with the hypotonia and decreased muscle strength to help keep up with developmental milestones.
  3. Genetic counseling is required for case management purposes (diagnosis, risk recurrence, education, identification of recourses, and follow up psycho- social support).
  4. Endocrine evaluations will be needed to evaluate growth and other endocrine problems (e.g., diabetes, hypothyroidism and adrenal issues) that develop.
  5. Orthopedic evaluation for scoliosis and joint problems secondary to excessive weight.
  6. Ophthalmology assessment for strabismus and to examine for other visual problems.
  7. Dental evaluations for enamel defects and help with dry mouth.
  8. Gastroenterology evaluation and management of hyperphagia, rumination, gastric dilation, and inability to vomit, all common in PWS.
  9. Assessments by psychologists or psychiatrists and assistance with behavior problems commonly associated with PWS.
  10. Educational and developmental assistance from occupational and speech therapists to address cognitive issues from infancy through adulthood and includes vocational training.
  11. Social worker involvement for support and assistance in identifying resources and life long planning, including assisted living arrangements and residential group homes.

Resources

Services

Child Psychiatry

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Child Psychology

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General Dentistry for CSHCN

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Group Homes

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Independent Living

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Nutrition/Dietary

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Occupational Therapy

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Pediatric Endocrinology

See all Pediatric Endocrinology services providers (6) in our database.

Pediatric Gastroenterology

See all Pediatric Gastroenterology services providers (2) in our database.

Pediatric Genetic Counseling

See all Pediatric Genetic Counseling services providers (4) in our database.

Pediatric Ophthalmology

See all Pediatric Ophthalmology services providers (5) in our database.

Pediatric Orthopedics

See all Pediatric Orthopedics services providers (2) in our database.

Physical Therapy

See all Physical Therapy services providers (31) in our database.

Social Work

See all Social Work services providers (11) in our database.

Speech/Language Therapy

See all Speech/Language Therapy services providers (35) in our database.

Vocational Education

See all Vocational Education services providers (158) in our database.

For other services related to this condition, browse our Services categories or search our database.

Authors

Author: Merlin G. Butler MD, PHD, 9/2008
Reviewing Author: Kyna Byerly MS, CGC, 8/2008
Content Last Updated: 6/2011

Funding/Support

This page was developed in partnership with the Heartland Regional Genetics and Newborn Screening Collaborative and was funded in part by a Health Resources Services Administration (HRSA) cooperative agreement (U22MC03962). We appreciate the Prader-Willi Syndrome Association (USA) for their outstanding support of individuals with PWS and their families and for the information they provide on their website – www.pwsausa.org – to which we have provided several links within the Diagnosis Module.