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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. Physical therapy will assist with hypotonia and decreased muscle strength to help keep up with developmental milestones.
  3. Clinical genetics and counseling services may be needed for diagnosis, risk recurrence, referrals, education, resources, and follow-up with psycho-social support.
  4. Endocrine evaluations to evaluate growth and other endocrine problems (e.g., diabetes, hypothyroidism, adrenal issues).
  5. Orthopedic evaluation for scoliosis and joint problems secondary to excessive weight.
  6. Ophthalmology assessment for strabismus and other visual problems.
  7. Dental evaluations for enamel defects and help with dry mouth.
  8. Gastroenterology evaluation and management of hyperphagia, swallowing problems, rumination, gastric dilation, gastroparesis, and inability to vomit.
  9. Assessments by psychologists or psychiatrists and assistance with behavior problems commonly associated with PWS.
  10. Educational and developmental assistance from infancy through adulthood from occupational, physical, and speech therapists to help address cognitive issues and include vocational training.
  11. Social worker involvement for support, identification of resources, and lifelong planning, including arrangements for assisted living and residential group homes in adulthood.

Resources

Information & Support

For Professionals

Genetics in Primary Care Institute (AAP)
Contains health supervision guidelines and other useful resources for the care of children with genetic disorders; American Academy of Pediatrics.

Services Nationwide

Select services for a specific state: ID, MT, NM, NV, RI, UT

Adult Residential Care Homes

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General Counseling Services

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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 Genetics

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Pediatric Ophthalmology

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Pediatric Orthopedics

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Physical Therapy

We currently have no nationwide Physical Therapy service providers listed; search our Services database for related services or, if relevant for you, a state link above.

Prader-Willi Clinics

We currently have no nationwide Prader-Willi Clinics service providers listed; search our Services database for related services or, if relevant for you, a state link above.

Psychiatry/Medication Management

We currently have no nationwide Psychiatry/Medication Management service providers listed; search our Services database for related services or, if relevant for you, a state link above.

Social Workers

We currently have no nationwide Social Workers service providers listed; search our Services database for related services or, if relevant for you, a state link above.

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 & Reviewers

Initial publication: September 2008; last update/revision: July 2019
Current Authors and Reviewers:
Author: Merlin G. Butler, MD, PhD
Funding: 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.
Authoring history
2014: update: Merlin G. Butler, MD, PhDA
2008: update: Merlin G. Butler, MD, PhDA
2008: first version: Kyna Byerly, MS, CGCCA
AAuthor; CAContributing Author; SASenior Author; RReviewer