Dr. Jessica Duis gave the 1-hour presentation below at the 2019 FPWR Family Conference. In it, she shares current standards of care for people with PWS who are ages 0 to 2.

Dr. Duis is a geneticist at Vanderbilt University with an unbridled passion for people with PWS. Trained in both pediatrics and genetics at Johns Hopkins Hospital, she also spent a year specializing in epigenetics research, focusing her bench and clinical work on PWS. She has established a multidisciplinary clinic for PWS at Vanderbilt and has authored “A Multidisciplinary Approach to the Clinical Management of Prader–Willi Syndrome" in which she documents comprehensive medical care considerations for individuals with PWS.

Timestamps and topics are provided below the video for easy viewing of specific content.

2019-Conference-Standards-of-Care-Ages-0-2-Jessica-Duis

 

Presentation Sections With Timestamps

Time Presentation
01:30 Diagnosing PWS
03:00 Message to newly diagnosed families – finding your support team
06:00 Lets get started – other than growth hormone (GH) there is no 1 prescription
06:30 Skin to skin care, postpartum depression
07:20 Undescended testes, use of HCG
08:10 Monitoring for hip dysplasia 
10:00 Nutritional phases of PWS
11:30 A fed baby is a healthy baby – feeding tips and tube recommendations
13:43 Positioning can be key [video]
14:45 Aspiration is common (90% of infants) – may need to thicken formula and pay attention!
17:11 Nipple flow rate and bottle recommendations
17:50 NG tube feeding scarring caution
18:50 Formula vs breastmilk – adjusting calories
20:30 Reflux
20:50 A caution on Nissen fundoplication 
21:51 Introducing of solids
23:40 Liquids and cup recommendations
24:48 Starting solids
26:30 Starting supplements
27:26 Supplements (coq10, levocarnitine, MCT oil, B vitamins, DHA, multivitamin, biotics)
35:10 Early intervention (speech, PT, OT recommendations)
44:35 Behavior and childcare
47:00 GH makes a difference!
48:45 Sleep and sleep studies for GH therapy
50:00 Obstructive sleep apnea – often improves with GH treatment
50:50 Central sleep apnea 
51:10 Other treatment considerations: scoliosis, constipation, allergies, viscous saliva
53:00 Oxytocin – benefits and considerations/cautions
56:40 Multidisciplinary Clinic at Vanderbilt University
57:25 Q&A

 

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