Multi-Disciplinary Management for Prader-Willi Syndrome
- 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
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 for Patients & Families Nationwide (NW)
| Service Categories | # of providers* in: | NW | Partner states (6) (show) | | ID | MT | NM | NV | RI | UT | |
|---|---|---|---|---|---|---|---|---|---|---|---|
| General Counseling Services | 1 | 200 | 147 | 96 | 207 | 32 | 387 | ||||
| General Dentistry | 1 | 105 | 259 | 13 | 25 | 24 | 139 | ||||
| Genetic Testing and Counseling | 7 | 11 | 13 | 64 | 16 | 9 | 16 | ||||
| Independent Living Arrangements & Skills | 2 | 105 | 14 | 349 | 89 | 22 | 97 | ||||
| Nutrition Assessment Services | 1 | 1 | 83 | 5 | 2 | 8 | |||||
| Occupational Therapy | 27 | 40 | 297 | 27 | 11 | 38 | |||||
| Pediatric Endocrinology | 1 | 2 | 14 | 29 | 6 | 13 | 4 | ||||
| Pediatric Gastroenterology | 1 | 3 | 15 | 8 | 6 | 19 | 4 | ||||
| Pediatric Genetics | 1 | 3 | 7 | 4 | 4 | 4 | 6 | ||||
| Pediatric Ophthalmology | 1 | 9 | 14 | 9 | 6 | 8 | 6 | ||||
| Pediatric Orthopedics | 2 | 4 | 16 | 13 | 7 | 12 | 18 | ||||
| Physical Therapy | 34 | 46 | 320 | 30 | 3 | 49 | |||||
| Prader-Willi Clinics | 2 | ||||||||||
| Psychiatry/Medication Management | 20 | 19 | 14 | 52 | 78 | 64 | |||||
| Social Workers | 10 | 35 | 7 | 10 | |||||||
| Speech - Language Pathologists | 3 | 67 | 51 | 376 | 28 | 23 | 72 | ||||
| Supportive Housing & Residential Care Homes | 30 | 4 | 107 | 6 | 6 | 37 | |||||
| Vocational Education | 2 | 79 | 32 | 335 | 57 | 10 | 98 | ||||
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.