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
