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Down Syndrome PDF

226 Pages·2008·2.384 MB·English
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thefacts Down syndrome 06 also available in thefacts series Eating disorders: thefacts Panic disorder: thefacts FIFTH EDITION SECOND EDITION Abraham Rachman Sexually transmitted infections: Tourette syndrome: thefacts thefacts Robertson SECOND EDITION ADHD: thefacts Barlow Selikowitz Thyroid disease: thefacts Dyslexia and other learning FOURTH EDITION Vanderpump and Tunbridge diffi culties: thefacts SECOND EDITION Living with a long-term illness: Selikowitz thefacts Schizophrenia: thefacts Campling SECOND EDITION Prenatal tests: thefacts Tsuang DeCrespigny Depression: thefacts Obsessive-compulsive disorder: Wassermann thefacts Polycystic ovary syndrome: THIRD EDITION thefacts De Silva Elsheikh and Murphy The pill and other forms of Autism and Asperger syndrome: hormonal contraception: thefacts thefacts SIXTH EDITION Guillebaud Baron-Cohen Myotonic dystrophy: thefacts Motor neuron disease: thefacts Harper Talbot and Marsden Ankylosing spondylitis: thefacts Muscular dystrophy: thefacts Khan THIRD EDITION Emery Prostate cancer: thefacts Stroke: thefacts Mason Lindley Multiple sclerosis: thefacts Osteoarthritis: thefacts FOURTH EDITION Matthews Arden, Arden, and Hunter Essential tremor: thefacts Cosmetic surgery: thefacts Plumb Waterhouse thefacts Down syndrome THIRD EDITION MARK SELIKOWITZ Consultant Developmental Paediatrician Sydney, Australia 1 1 Great Clarendon Street, Oxford OX2 6DP Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide in Oxford New York Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offi ces in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam Oxford is a registered trade mark of Oxford University Press in the UK and in certain other countries Published in the United States by Oxford University Press Inc., New York © Oxford University Press 2008 The moral rights of the author have been asserted Database right Oxford University Press (maker) First published 1990 Second edition 1997 This edition 2008 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, or under terms agreed with the appropriate reprographics rights organization. Enquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above You must not circulate this book in any other binding or cover and you must impose this same condition on any acquirer British Library Cataloguing in Publication Data Data available Library of Congress Cataloguing in Publication Data Selikowitz, Mark. Down syndrome: the facts / Mark Selikowitz. — 3rd ed. p. cm. — (The facts) ISBN 978–0–19–923277–2 1. Down syndrome—Popular works. I. Title. RJ506.D68S45 2008 618.92¢858842—dc22 2008003360 Typeset by Cepha Imaging Pvt. Ltd., Bangalore, India Printed in China on acid-free paper by Asia Pacifi c Offset ISBN 978–0–19–923277–2 1 3 5 7 9 10 8 6 4 2 Whilst every effort has been made to ensure that the contents of this book are as complete, accurate, and up-to-date as possible at the date of writing, Oxford University Press is not able to give any guarantee or assurance that such is the case. Readers are urged to take appropriately qualifi ed medical advice in all cases. The information in this book is intended to be useful to the general reader, but should not be used as a means of self-diagnosis or for the prescription of medication. Preface to this edition The text has been updated to include information about new developments in the treatment of individuals with Down syndrome. The chapter on prenatal diagnosis has been revised to include information about screening tests now available. The addresses in the appendix were current in October 2007. I am grateful to Dr Gary Sholler, paediatric cardiologist, who read the chapter on the heart, and made many valuable suggestions. My aim, as before, has been to make the book readable and to include as much practical advice as possible. I have endeavoured to provide balanced information, so that parents can make informed choices. M.S. Sydney October 2007 v This page intentionally left blank Preface to the second edition In the preface to the fi rst edition of this book, I expressed the hope that par- ents would fi nd the book helpful. There are many reasons to believe that this hope was realized. I have received countless letters from parents all over the world telling me how much the book has helped them. A number of Down syndrome support organizations supplied the book to public libraries and maternity hospitals in their state or province. In addition the book has been translated into several languages, and has been used as a text for courses at several educational centres. Two particular attributes of the book seem to have been responsible for its success: its easy readability and its positive tone. For this second edition I have tried to ensure that these qualities have been retained. To ensure that the book would retain its accessibility to parents, changes have only been made where information has become out of date, or where impor- tant new developments have occurred. An example of such a development has been the considerable shift in thinking about screening and prevention of atlantoaxial subluxation, and so the section on atlantoaxial instability has been substantially rewritten. There has been no diffi culty retaining the positive tone of the book. There is even more reason to be optimistic about the future of people with Down syndrome than when the fi rst edition was written 7 years ago. This is due to the many new developments in educational, social, and employment opportunities for people with Down syndrome as well as changes in com- munity attitudes. One of the most encouraging developments has been the greater attention paid to the wishes of people with Down syndrome themselves. It is now common for people with the syndrome to sit on committees vii Down syndrome · thefacts run by Down syndrome support groups and to present papers at conferences held by such organizations. In this way services for people with Down syn- drome will cater more appropriately to the needs of those who actually use them. M.S. Sydney January 1997 viii Preface to the fi rst edition This book has been written for parents who have a child with Down syn- drome. It will also be of interest to relatives, friends, teachers, therapists, doc- tors, and others who come into contact with your child. But it is to you, the parent, that it is primarily directed. There have been enormous changes for people with Down syndrome over the past two decades. Children with the syndrome now usually live at home and enjoy the love and stimulation they receive from their families. They benefi t from early teaching and special help through the school years. Included in everyday activities, they are socially more competent, and their needs for recreation and friendship are increasingly being catered for. With improved health care, they are living healthier lives. For adults, vocational training and employ- ment prospects are increasing, as are opportunities for supervised living in the community. There has also been an expansion in community support services providing help to parents. There is no doubt that parents can now look for- ward to a brighter future for their child than ever before. These changes have brought with them new choices, and parents need to be better informed than in the past. With a range of options, and often confl ict- ing advice from different quarters, parents are asking many questions: Should I take my child to early intervention? Does it work? Is one form better than another? How much of the programme should I follow at home? How do I discipline my child? What do I tell my other children? Should I send my child to preschool? Should my child attend a special school or an ordinary school? Special recreation or ordinary recreation programmes? What about my child’s sexual development? What special health precautions should be taken? How do I get the most out of services? Who will look after my child when I am no longer able to do so? And many more. As a developmental paediatrician seeing many children with Down syndrome and their parents, I am aware that there is no single right answer to many of ix

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