PRADER-WILLI SYNDROME (PWS).

SAGAR HOSPITALS,BANGALORE ORGANISES PARENT GROUP MEETING.

Prader-  Willi syndrome is a genetic condition.
It is the most common known genetic cause of life threatening obesity in children.It is a complex genetic disorder most commonly related to problems along chromosome 15.The genes lacking in people  with Prader-willi syndrome  have a major role in the regulation of appetite & metabolic levels,cognitive functions & behaviour patterns.

Two of the most outstanding characteristics of Prader-Willi Syndrome are insatiable
appetite & behaviour problems.
DO.
1.Keep food inaacessible at all times.Put it away & lock the cupboards & refrigerator.
2.Keep their lives structured.Pre plan changes.
3.Praise & recognise good performances.A lot of mileage can be obtained with a few
   words,smiles &  hugs.
4.Include the person with PWS in planning & programming.Will cooperate 100
   percent if they feel it was their idea.
5.Keep sight of the fact tha the hand of a person with PWS is quicker than your eye.
6.Enjoy your treats in private.It is very hard for the person with PWS to watch others
   enjoying goodies he is denied.
7.Use smaller plates & cups  and spread to make the quantity of food look larger.
8.Inform neighbours,relatives,teachers,baby sitters,class mates,& every one around 
   the child with PWS about the Do's & Don'ts.
9.Be consistent.
10.Remember that logic & reason will not prevail when the person with PWS
     gets upset and/or "stuck" on an idea or position.

DON't.
1. Use food as reward or punishment except on a very limited basis.
2. Once a  behaviour has been dealt with,donot bring it up again.
3. Tease or using  subtle humour.It will not work.
4.Donot lose your cool  & nothing will be gained if you lose control.
5.Persons with PWS rarely accept change. 
6.Hesitate to ask for professional help.
The seminar which was attended by parents with PWS children were given
lot of inputs by experts. The subjects included,Genetic aspects,Meal planning,
Behavioural management,Sleep apnoea,Upper airway obstruction,pulmonology,
ENT,Hypotonia,exercise therapy,etc. The experts answered all the questions
of the parents and the parents shared their experiences.