Having a child with Prader-Willi syndrome and related behavioral problems is challenging and can take a lot of patience. Managing eating problems, behaviors and medical issues can impact the whole family.
Some people find it helpful to talk with others who share similar experiences. Ask your health care provider about family support groups in your area. Organizations such as the Prader-Willi Syndrome Association provide resources, support groups and educational materials. You can reach the Prader-Willi Syndrome Association at 800-926-4797.
April 17, 2014
- Cassidy SB, et al. Prader-Willi syndrome. Genetics in Medicine. 2012;14:10.
- Scheimann AO. Clinical features, diagnosis, and treatment of Prader-Willi syndrome. http://www.uptodate.com/home. Accessed Dec. 16, 2013.
- Prader-Willi syndrome. Genetics Home Reference. National Library of Medicine. http://ghr.nlm.nih.gov/condition/prader-willi-syndrome. Accessed Dec. 16, 2013.
- Emerick JE, et al. Endocrine manifestations and management of Prader-Willi syndrome. International Journal of Pediatric Endocrinology. 2013;1:14.
- Scheemeyer E. Prader-Willi syndrome: Care of adults in general practice. Australian Family Physician. 2013;42:51.
- Grechi E, et al. Prader-Willi syndrome: Clinical aspects. Journal of Obesity. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3486015/. Accessed Dec. 16, 2013.
- Mazaheri MM, et al. The impact of Prader-Willi syndrome on the family's quality of life and caregiving, and the unaffected siblings' psychosocial adjustment. Journal of Intellectual Disability Research. 2013;57:861.
- Overview of early intervention. National Dissemination Center for Children with Disabilities. http://nichcy.org/babies/overview. Accessed Dec. 21, 2013.
- Pittock ST (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 9, 2014.
- Lteif AN (expert opinion). Mayo Clinic, Rochester, Minn. Jan. 9, 2014.
- Intellectual disabilities. In: Diagnostic and Statistical Manual of Mental Disorders DSM-5. 5th ed. Arlington, Va.: American Psychiatric Association; 2013. http://www.psychiatryonline.com. Accessed Jan. 10, 2014.