PRADER WILLI SYNDROME

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PWS was first described in 1956 by two Swiss doctors; Prof. A. Prader and Dr H. Willi.

In early childhood, children with this condition will develop an extreme preoccupation with food and in some cases will develop an insatiable appetite. Children with PWS are generally placid and friendly but are at a higher risk for becoming obese and developing challenging behaviours.

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This condition has a number of unique and clearly definable features including;

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• Hypotonia or weak muscle tone

• Poor co-ordination and balance

• immature development of sexual organs and central nervous system

• endocrine gland dysfunction, leading to varying degrees of learning disability

• Problems with physical development – children with Prader Willi Syndrome are often short in stature

• Poor social and emotional development.

 

PWS is caused by an abnormality on chromosome 15, with the majority of cases caused by a deletion on the chromosome 15 inherited from the father. A small minority of people have a translocation or imprinting irregularity involving chromosome 15.

This condition is thought to be a purely accidental occurrence. Sometimes a child may develop PWS from a head injury or from complications during childbirth. In these cases, sufferers will not show the physical effects of the condition but may acquire some or all of the behavioural problems associated with the syndrome.

 

Many of the children we work with need a range of treatments, including physical therapy and exercise, a dietary regime, growth hormone therapy, and Verbal Behaviour.

NETwork Interventions specialises in using Verbal Behaviour (VB) to teach language, communication and behavioural skills to children with Prader Willi and many other disorders and conditions. Verbal Behaviour is a highly effective way of teaching new communication skills and behaviours and preventing the onset of additional problems. This includes preventing the onset of obsessive compulsive disorder, anxiety disorder, and challenging behaviour. We will work with you and your child, providing the expertise and support you need to teach your child new communication skills and behaviours, to minimise the impact of Prader Willi Syndrome on your child’s life and future.

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Some of the children we work with progress so well that they learn to behave and interact in a way that makes them indistinguishable from other children of the same age. Not all children are able to achieve this, but every child we work with can make great gains and reach his or her unique potential.

 

The results that you can expect depend on how involved family and school are able to be. The more closely we work with you, the more effective the results will be. It is important that the recommendations we make suit not only your child’s needs, but also the situation of your family and your child’s school. It will be crucial for our recommendations to become a way of life. Don’t worry, this isn’t scary – we will walk with you every step of the way until you no longer need us.

 

Most children with PWS who come to us are very frustrated and often their parents come to us because they are unable to deal with their aggressive outbursts and unable to help them deal with their extreme emotion, such as intense crying. There is so much that we can do to help.

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