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:
- Nutritional services by a registered dietitian to help gain, maintain, or lose weight as needed. These services will be required throughout life.
- Physical therapy will assist with hypotonia and decreased muscle strength to help keep up with developmental milestones.
- Clinical genetics and counseling services may be needed for diagnosis, risk recurrence, referrals, education, resources, and follow-up with psycho-social support.
- Endocrine evaluations to evaluate growth and other endocrine problems (e.g., diabetes, hypothyroidism, adrenal issues).
- Orthopedic evaluation for scoliosis and joint problems secondary to excessive weight.
- Ophthalmology assessment for strabismus and other visual problems.
- Dental evaluations for enamel defects and help with dry mouth.
- Gastroenterology evaluation and management of hyperphagia, swallowing problems, rumination, gastric dilation, gastroparesis, and inability to vomit.
- Assessments by psychologists or psychiatrists and assistance with behavior problems commonly associated with PWS.
- Educational and developmental assistance from infancy through adulthood from occupational, physical, and speech therapists to help address cognitive issues and include vocational training.
- Social worker involvement for support, identification of resources, and lifelong planning, including arrangements for assisted living and residential group homes in adulthood.
Resources
Services for Patients & Families Nationwide (NW)
| Service Categories | # of providers* in: | NW | Partner states (5) (show) | | MT | NM | NV | RI | UT | |
|---|---|---|---|---|---|---|---|---|---|---|
| General Counseling Services | 1 | 147 | 41 | 206 | 31 | 373 | ||||
| General Dentistry | 1 | 259 | 1 | 25 | 30 | 136 | ||||
| Genetic Testing and Counseling | 7 | 13 | 7 | 14 | 9 | 14 | ||||
| Independent Living Arrangements & Skills | 1 | 14 | 27 | 88 | 22 | 100 | ||||
| Medical Genetics | 1 | 8 | 4 | 5 | 4 | 6 | ||||
| Nutrition Assessment Services | 1 | 5 | 2 | 7 | ||||||
| Occupational Therapy | 43 | 38 | 27 | 15 | 38 | |||||
| Pediatric Endocrinology | 1 | 14 | 1 | 6 | 13 | 3 | ||||
| Pediatric Gastroenterology | 1 | 15 | 1 | 6 | 19 | 4 | ||||
| Pediatric Ophthalmology | 1 | 14 | 1 | 6 | 8 | 5 | ||||
| Pediatric Orthopedics | 2 | 16 | 3 | 7 | 12 | 18 | ||||
| Physical Therapy | 48 | 33 | 30 | 5 | 51 | |||||
| Prader-Willi Clinics | 2 | |||||||||
| Psychiatry/Medication Management | 19 | 52 | 78 | 56 | ||||||
| Social Workers | 10 | 7 | 10 | |||||||
| Speech - Language Pathologists | 4 | 55 | 4 | 29 | 29 | 71 | ||||
| Supportive Housing & Residential Care Homes | 4 | 26 | 6 | 6 | 37 | |||||
| Vocational Education | 2 | 32 | 54 | 56 | 9 | 86 | ||||
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Funding:
This page was developed in partnership with the Heartland Genetic Services Network 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.