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Multi-Disciplinary Management for Prader-Willi Syndrome

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 who will assist with the hypotonia and decreased muscle strength to help keep up with developmental milestones.
  3. Genetic counseling for case management purposes (diagnosis, risk recurrence, education, identification of recourses, and follow up psycho-social support).
  4. Endocrine evaluations 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

Information & Support

For Professionals

Genetics in Primary Care Institute (AAP)
The goal of this site is to increase collaboration in the care of children with known or suspected genetic disorders. It includes health supervision guidelines and other useful resources; represents a collaboration among the Health Resources & Services Administration, the Maternal and Child Health Bureau, and the American Academy of Pediatrics.

Services

Adult Residential Care Homes

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Clinical Social Worker (LCSW, MSW)

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General Dentistry

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Independent Living

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Nutrition Assessment Services

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Occupational Therapy, Pediatric

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Pediatric Endocrinology

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Pediatric Gastroenterology

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Pediatric Genetic Counseling

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Pediatric Ophthalmology

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Pediatric Orthopedics

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Physical Therapy

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Psychiatrist, Child-18 (MD)

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Psychologist, Child-18 (PhD, PsyD)

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Speech - Language Pathologists

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Vocational Education

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

Authors

Author: Merlin G. Butler, MD, Ph.D. - 9/2008
Reviewing Authors: Merlin G. Butler, MD, Ph.D. - 11/2014
Kyna Byerly, MS, CGC - 8/2008
Content Last Updated: 11/2014

Funding/Support

This page was developed in partnership with the Heartland Genetic Services 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.