INTRODUCTION
This Rett Resource aims to provide comprehensive information on a range of issues covering many of the complex features of Rett syndrome, giving guidance on day-to-day management.
It will be an invaluable resource as well as a significant guide for families, therapists and others who are involved in working with and supporting people with Rett syndrome.
The choice of the authors was made by Rett Centres and European Rett Associations, on the basis of their expertise and experience in Rett syndrome and their particular area of work.
We are especially grateful to all the authors who contributed. They have used their own time and special knowledge to write these articles for us.
Special thanks to our board members (Yvonne Milne, Danijela Szili, Wilfried Asthalter, Stella Peckary and Caroline Lietaer) for their substantial contribution to this project and to Tim Addison, UK for proof reading the submissions, Tim Lang for the design and Andreas Meissner for the coverpage. Thomas Bertrand and Laura Kanapieniene for the website.
As parents ourselves, we at Rett Syndrome Europe know how invaluable all the information contained within the Rett Resource will be to you, and all involved in the care of your Rett daughter or son. We invite you to print the articles freely and circulate them as widely as you need to.
Please be advised that the content of each article expresses the personal opinion and experience of each author and might be subject to specific national regulations which have to be observed.
IMPORTANT NOTE Please note that under no circumstances can you have authorisation to publish these articles on other websites and any translation MUST be carried out by an approved and professional translator. If you are in any doubt, please contact info@rettsyndrome.eu for advice.
TABLE OF CONTENTS
Drooling management – Helen Cockerill, UK
Emotion, behaviour and depression – Sarojini Budden, USA
Epilepsy in Rett syndrome – Nadia Bahi Buisson, Marie Hully, Elisabeth Celestin, FR
Genetic aspects of Rett syndrome – Laurent Villard, FR
Hippotherapy: developing motor and communication skills – Lena Svedberg, SE
Hydrotherapy – Stella Peckary, AT
Management of gastrointestinal disorders in Rett syndrome – Jenny Downs & Helen Leonard, AU
Managing bone health in Rett syndrome – Jenny Downs & Helen Leonard, AU
Managing poor growth and nutrition in Rett syndrome – Jenny Downs & Helen Leonard, AU
Managing scoliosis in Rett syndrome– Jenny Downs & Helen Leonard, AU
Music therapy: meeting physical, emotional, cognitive and social needs – Märith Bergström-Isacsson, SE
Nutrition and hydration – Irène Benigni, FR
Occupational therapy for hands: facilitating adults’ daily living activities – Asa-Sara Sernheim, SE
Physical therapy for Rett syndrome – Meir Lotan, IL
Physiotherapy: developing and improving motor functions – Lena Svedberg, SE
Puberty in Rett syndrome – Hilary Cass UK
Scoliosis in Rett syndrome – Sabine Leimer AT
Screaming episodes in Rett syndrome – Hilary Cass, UK
Sleeping problems – Lietaer Caroline & Robert James Goddard, NL
Stereotypies and movement disorders in Rett syndrome – Nadia Bahi Buisson, Marie Hully, Elisabeth Celestin, FR