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Autistic spectrum in PWS

It has often been commented upon that behaviours in PWS seem autistic-like.  For many years parents have seen this in their son or daughter with PWS, but it wasn't until recently that behavioural specialists and medical researchers started to look...

Dietary Management

It is important that food management starts early. It is far easier to start outright than to remove privileges because of weight gain. It is also important that you recognise that food-seeking will be a problem which may result in...

For new parents

Learning that your new baby has Prader-Willi Syndrome (PWS) can be devastating. Being given a label that you've probably never heard of before can turn your world upside down in an instant. There are many questions you will want answers...

Managing the syndrome

While your child is young, there is much you can put in place that will make later management much easier. It is important to set some boundaries (for your child, and for yourselves) that will stand you in good stead...

Sexual development

Without sex hormone therapy, sexual maturity in PWS does not fully develop. The child with PWS will begin puberty, usually around the age of 10-12, but not complete it. Known as 'precocious puberty' there will be a development in body...

Understanding the Behaviours

By Linda Thornton All behaviour can be seen as communication.  In PWS, the questions, "When do behaviours start?" and "How do I handle challenging behaviours?" are often asked.  Communication will often break down - between the parent and child,...

Health Supervision for Children with PWS

This set of guidelines was designed to assist the pediatrician in caring for children with Prader-Willi syndrome diagnosed by clinical features and confirmed by molecular testing. Prader-Willi syndrome provides an excellent example of how early diagnosis

Communication Breakdown

The difficult thing with "PWS behaviour" is being able to understand why your child may have temper tantrums, or explosive behaviours, melt-downs, call them what you will. What may seem to you and others like an...

PWS Look-alike Disorders

( compiled by Linda Thornton) In April 2001, Celanie K. Christensen, MS, and Bryan E. Hainline, MD, PhD from the Dept of Medical and Molecular Genetics and Pediatrics of Indiana University School of Medicine,...

Siblings

( by Linda Thornton) Siblings often find their role in a family where their brother or sister has a disability, the hardest of all. Somehow their parents seem to have to spend more time with the sister or...

School years

(by Linda Thornton) I have written this as a general guideline for parents of school-age children.  Of course, each country is different, and each culture is different.  You may, however, find some of this helpful.  Children with...

Health and Wellness

General Health in PWS The following information has been generously contributed by Dr Susanne Blichfeldt, Paediatrician and Scientific Adviser to the International PWS Organisation, and is taken from...

Norway-Romanian Partnership

Aging in PWS

Aging in Prader-Willi syndrome, dementia, early onset alzheimers, health and wellness

Law Enforcement