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Prader-Willi Syndrome

What is Prader-Willi syndrome?

• A disorder of chromosome 15
• Prevalence: 1:12,000- 15,000 (both sexes, all races)
• Major characteristics: hypotonia, hypogonadism, hyperphagia, cognitive impairment, difficult behaviors
• Major medical concern: morbid obesity

About Prader-Willi syndrome

• History of Prader-Willi Syndrome

• The Genetics of Prader-Willi Syndrome: An Explanation for the Rest of Us     

• Frequently Asked Questions about PWS

• Basic Facts about PWS

• Diagnostic Criteria 

• The Genetics of Chromosome 15
• Genetic Testing

• Glossary of terms associated with PWS

• A Comprehensive Team Approach to the Management of Prader-Willi Syndrome

 Medical Concerns

• Guidelines for Postoperative Monitoring of Pediatric Patients with Prader-Willi Syndrome Click here

• Prader-Willi Syndrome Growth Hormone Deficiency and Treatment Click here

• Anesthesia and PWS

• Respiratory Problems in Prader-Willi Syndrome
• Recommendations for Evaluation of Breathing Abnormalities Associated with Sleep in Prader Willi Syndrome
  Consensus statement from PWSA (USA)'s Clinical Advisory Board - 12/03
   

• In light of the report of PWS deaths associated with choking, we think it is important for parents and providers to have knowledge on the Heimlich procedures. The most effective way to learn these methods is to take a CPR course that includes practice of the Heimlich procedures, thus we encourage all to take such a course with frequent reviews. Please remember, it is important to dislodge the food prior to doing CPR  Instructions for saving a choking victim using the Heimlich Maneuver

• Medical Alert: Important for Medical Treatment

• Common Questions about GH and PW

• Considering Herbal Supplements
• A Comprehensive Team Approach to the management of Prader-Willi Syndrome
  Pharmacia

Psychiatric Concerns

Finding Psychiatric Help for Your Child (Revised) by Pittsburgh Partnership, Janice Forster, MD and Linda Gourash, MD. covers what to look for in a consultant and how to prepare for the consultation in order to make the most out of the time. This document is for parents, teachers, psychologists and other providers seeking psychiatric help for the child or adult with PWS.

Food Security by Pittsburgh Partnership. Janice Forster, MD and Linda Gourash, MD describe the basic principles which greatly aid in maintaining both weight and behavioral control.

Psychiatrists' Primer for PWS by Pittsburgh Partnership. Prepared for psychiatrists and psychologists by Janice Forster, MD and Linda Gourash, MD. Includes principles of Food Security and Treatment algorithms for common presenting problems.

Diet Resources

• Prader-Willi Food Pyramid

Red, Yellow, Green diet from

Order the diet that works!