We hope you and your family have enjoyed your child’s preschool years. They are now reaching primary school age. Their teachers and community will be seeking knowledge about the syndrome. Children living with Prader-Willi syndrome usually see a variety of professionals during this time, including paediatricians, endocrinologists, speech therapists, occupational therapists, physiotherapists and dietitians. Later on, as your child approaches their teenage years, your child may experience a myriad of confusing emotions. This is often a time when those living with PWS begin to notice differences between themselves and their friends. Understand more about PWS, medical treatment, how to support individuals and how to help your child reach their full potential.

Healthcare 6-13 years

Food seeking and related complications, medical indications and monitoring.

Growth hormone for children living with PWS

Benefits and side effects of growth hormone treatment, when to start GH treatment, sleep aponea.

Speech and language in PWS

Developing communication, signing and the role of speech and language therapists.

Dental tips

Brushing teeth, tooth bruch handles, sticky saliva, thin tooth enamel, chosing a dentist, the tooth fairy.

Your child at school 6-13 years

Types of schools and types of support.

Vision and care for the eyes

Strabismus (squint), astigmatism and eye infections (conjunctivitis, blepharitis): Cause and treatment.

Information for GP’s

An overview of characteristics of PWS, with health care risk and recommendations.

Hospital admission guidelines

Royal Prince Alfred Hospital recommened admission policy for people living with PWS

Growing up with PWS videos

A series of animations on geneder related topics and interpersonal expeiences for people with PWS

Let’s talk about PWS – a workbook about Prader-Willi syndrome

Topics for families and their children to open discussion about differences and what it’s like living with PWS

Medical alert checklist for schools

A snapshot of the types of health issues that might need attention in the school environment.

Caring for yourself and other family members

You are not alone, sharing experiences with other families, spending time with family, focusing on the positive achievements.

Disclaimer: The content on this website is for information only. Everyone is an individual and needs to seek the advice of relevant professionals.