Standards of Care for Adults and Children With PWS [2019 CONFERENCE VIDEO]

Whether you are new to PWS or a veteran, its important to stay current on standards of care. In this 57-minute video, Dr. Jessica Duis describes standards of care for both children and adults with PWS, covering topics such as supplements, oxytocin, constipation and gastroparesis, hormone replacement and growth hormone therapy. Click below to watch the video. If you're short on time, scroll down to the presentation outline to find the portions you're most interested in.

 

Presentation Sections With Timestamps

00:30 Background

01:45 What we know about PWS is constantly changing!

02:40 Finding your team

04:52 IQ and Learning Profile

05:40 Autism and PWS

07:20 Therapies are Key

09:11 Adaptive Sports/Exercise

11:00 Personality

12:45 Behavioral Outbursts

13:38 Management

15:25 Magical Thinking & Psychosis

17:10 Nutritional Phases of PWS

19:25 Nutritional Principals

21:45 Low Glycemic Index Foods

22:20 Nutrition Ages 1-3

22:55 Encouraging water consumption

23:35 Growth Hormone

25:08 GH has benefits outside of growth

25:25 Sex Hormones: Girls

27:44 Sex Hormones: Males

28:00 Reflux – affects 90% of people with PWS

28:15 Constipation – needs to be treated aggressively!

29:00 Gastroparesis

30:00 Practical Guide to Dietary Supplements

  • 30:35 COQ10
  • 31:14 Levocarnitine
  • 31:40 MCT Oil
  • 32:35 B vitamins
  • 33:46 DHA
  • 34:20 Supplements for Skin Picking
  • 35:30 Multivitamins

35:54 Sleep Disordered Breathing & Excessive Daytime Sleepiness

37:08 Sleep and Obstructions

39:22 Complications of Sleep Apnea

40:02 Other Treatment Considerations: Scoliosis, Allergies

40:55 Oxytocin

41:50 Vanderbilt Prader-Willi Multidisciplinary Clinic

42:11 Resource - Multidisciplinary approach to the clinical management of PWS

42:36 Q&A

55:40 Oxytocin v Carbetocin

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Topics: Research

Susan Hedstrom

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Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.

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