Prader Willi

About Prader Willi Syndrome (PWS)

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.

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

• 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.

What causes Prader-Willi?

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.

Helping your child with Prader Willi 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.

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.

What results can I expect?

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.

Did you know?

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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"Our son was diagnosed with Asperger’s aged 7; NETwork Interventions spent a day observing him at school and at home and quickly identified the skills he was lacking – skill deficits that we - and others working with our son - had not picked up on. NETwork Interventions trained us to help our son learn those missing skills. The results have been remarkable – he no longer cries about going to school, his concentration and behaviour are much better and he is far less likely to alienate others by the things he says. Thank you."
Parent in Surrey

"It is always a pleasure talking to Lu and Shelley - we think they are superstars!"
C & C, Ottawa

"The observation and assessment period that NETwork complete at the beginning is difficult to understand at the outset, but it turns out that it is an intricate process that [does] indeed find the issues to work on and subsequently address and resolve."
Mum, Quebec

"Dillan had significant behavioural issues and received a very late diagnosis of NVLD when he was 9 years old. This diagnosis did little to help our family. Louise quickly and efficiently set up a programme for our teenage son which rapidly identified his strengths and weaknesses. Shelley taught us and his teachers how to best address these, including language deficits which had previously remained unrecognised, Louise’s team worked within our budget, working hours and extensive travel commitments, working closely with school and our local authority to ensure everybody was on board and funding accessed. At times it felt as though Louise was coordinating a small army. Additional support of parent-counselling through Louise’s team proved invaluable, even though we were originally a little sceptical. It most likely made the difference between success and failure in our ability as parents to sustain a positive family unit whilst implementing the programme. We worked with NETwork Interventions for just under one year."
Dr Edwards, North London

"We would like to say a massive thank you for your hard work during the 2 day assessment. We are so grateful and highly impressed with your level of knowledge, confidence, professionalism as well as the kindness and respect shown to our family. Now, we really believe there is light at the end of the tunnel."
Monica, UK