Prader-Willi Syndrome Association (USA) is an organization of families and professionals working together to raise awareness, offer support, provide education and advocacy, and promote and fund research to enhance the quality of life of those affected by Prader-Willi syndrome.

Medical

Because PWS is so unique and subtle symptoms can be signs of a serious condition, it is imperative for all parents and professionals working with the syndrome to review this medical section.

More information is available when needed by calling 800-926-4797 or 941-312-0400.

• Sleep Problems - Cataplexy, Narcolepsy. etc. [Click here]
• Formula Thickening Agents Alert for PWS [Click here]
• Angel Flight  has access to airline tickets for study participants.  Patients must have a financial need and be able to travel by commercial airline.
• Medical Alert: Important for Medical Treatment
• Guidelines for Postoperative Monitoring of Pediatric Patients
• Growth Hormone Information [Click here]
• Gastric and Intestinal
  • GI issues Dr. Ann Scheimann 2010
  • Gastric and Intestinal Problems
  • Risk of Stomach Necrosis and Rupture
  • Acute Gastrointestinal Episodes can be Life-Threatening
  • Medical Alert Stomach
• Dental
  • Too Much Fluoride In Our Water?
  • Dental Tips and Tricks
  • Salivary Flow and Oral Abnormalities in PWS from the Taiwan International conference 2010 [Click here]
• Orthopedic Issues
  • Guidelines on Scoliosis Monitoring and Treatment
  • Scoliosis Survey Results
  • Surgical Treatment of Spinal Deformity
  • Osteoporosis Evaluation and Therapy in PWS
  • Clinical Concerns for the Orthopedic Surgeon
• Psychiatric Concerns
  • In-Patient Psychiatric Treatment and Weight Gain:
    Breaking the Cycle!
• Respiratory
  • Respiratory Problems
  • Recommendations for Evaluation of Breathing Abnormalities Associated with Sleep
  • Instructions for saving a choking victim using the Heimlich Maneuver
• Seizures
  • PWS Seizures Explanation & Medications  [Click here]
  • How common are Seizures with PWS? [Click here]
• Skin Picking
  • Publication by Drs. Linda Gourash and Janice Forster of the Pittsburgh Partnership [Click here]
• Edema & Hypoventilation
  • Edema in PWS
  • Clinical Presentation of Obesity Hypoventilation and Right Heart Failure in Prader-Willi Syndrome Poster [Click here]
• Considering Supplements? [Click here]
• The Children's Institute, Pittsburgh, PA [Click here]

Anesthesia, medication reactions

People with PWS may have unusual reactions to standard dosages of medications and anesthetic agents. Use extreme caution in giving medications that may cause sedation: prolonged and exaggerated responses have been reported.

• Anesthesia
• Anesthesia Concerns

Comprehensive Management

• From the American Academy of Pediatrics Clinical Report Health Supervision for Children With Prader-Willi Syndrome The Committee on Genetics [Click here]
• Endocrinology video overview on Prader-Willi syndrome by Mayo Clinic [click here]
• A Comprehensive Team Approach to the management of Prader-Willi Syndrome
• PWS Overview and Management - Medical Home Portal Development, Utah Medical Center. Dr. Merlin Butler, chairperson of our PWSA (USA) Scientific Advisory Board, reviewed and edited this website written for families and primary care physicians. To access this site, [Click Here]
• Formula Thickening Agents Alert [Click here] for details.
   

Telephone (800) 926-4797

• Psychiatric Concerns
• Diet Resources