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VIOLETA Smanagement pw

VIOLETA Smanagement pw

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Published by: elutaf on Nov 07, 2010
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11/07/2010

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Ethical management of patientswith Prader-Willi syndromeacross life span
Violeta Stan Md. PhD
University of Medicine and Pharmacy ³V Babes´ -TimisoaraEmergency Children¶s Hospital ³Louis Turcan-Timisoara
The 2nd Eastern European Conference on Prader Willi Sindrom29-30 octombrie 2010,Zalu
 
T
o act in the³person¶s best interests´
I
t is absolutely critical to have families, health care providers,communities educated about the physiologic, medical, and behavioralcharacteristics of the adult with PWS in order to avoid abuses.
from an ethical and legal point of view is essential to determine thecapacity of a person with Prader Willi Syndrometo make decisionabout his/he eating behavior 
the common law principle is to act in the ³person¶s best interests´ inthe least restrictive alternative, respecting the individual.
A
llowing serious weight gain and the serious health consequences isan abdication of responsibility from parents and health care providers,not a paternalistic approach.
 
Management of the diseasein the first month of life
Prader-Willi babies are hypotonic, do not wake to be fedand are in general unresponsive.
They can also present hypothermia and hypogonadism.
 providing an adequate nutrition, dietary fat for braingrowth and development is essential and
represents themain concern for the management of the disease in the first month of life.
F
or parents, it is important to provide counseling to assurethat the babies will receive and maintain the proper nutrition and early support in enhancing observationalskills for observation.

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