Customer Reviews (1)

The title says it all
We have an 11 year old daughter with Rett Syndrome named Meredith. We only recently heard about this wonderful book. For so many years we wondered what was going through Meredith's head - this book answered that question and many more. It was life changing. It is a MUST READ for parents, teachers and all other professionals that come into contact and care for our special children. ... Read more

Customer Reviews (1)

Good book for people who get a Rett diagnosis.
The author does a great job introducing the reader to what it is like to get a diagnosis of Rett Syndrome.He talks about different ways of dealing with the diagnosis, deals with coping mechanisms and celebrating life.Great book! ... Read more

Book Description
This volume provides a detailed survey of the clinical development of Rett syndrome from its earliest manifestations in childhood to adulthood. The volume surveys the developmental profile of the disease, its characteristic cluster of symptoms and signs, and categorizes the four main clinical stages in the development of motor disability. Particular emphasis is given to Rett syndrome variants and other clinical conditions which manifest themselves in a similar way to Rett syndrome. The development of scoliosis with age and disease stage is analysed. The neurophysiologic, neuropathologic and neurochemical characteristics are also examined. In addition, the volume looks at the molecular genetics of the syndrome, drug treatment and possible future developments. ... Read more

Book Description
This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to rett syndrome, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on rett syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Rett Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Rett Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Rett Syndrome; Chapter 5. Books on Rett Syndrome; Chapter 6. Multimedia on Rett Syndrome; Chapter 7. Physician Guidelines and Databases; Chapter 8. Dissertations on Rett Syndrome; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Child's Rights and Insurance; ONLINE GLOSSARIES; RETT SYNDROME GLOSSARY; INDEX. Related topics include: Autism, Dementia, Ataxia, and Loss of Purposeful Hand Use.Download Description
This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to rett syndrome, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on rett syndrome. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Rett Syndrome: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Rett Syndrome; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Rett Syndrome; Chapter 5. Books on Rett Syndrome; Chapter 6. Multimedia on Rett Syndrome; Chapter 7. Physician Guidelines and Databases; Chapter 8. Dissertations on Rett Syndrome; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Child's Rights and Insurance; ONLINE GLOSSARIES; RETT SYNDROME GLOSSARY; INDEX. Related topics include: Autism, Dementia, Ataxia, and Loss of Purposeful Hand Use. ... Read more

Customer Reviews (1)

A better choice would be ...
Unfortunately any book for the Internet Age will start to become obsolete before it is even printed.While this book provided a good presentation and relevant resources, in 5 years many of them are dated.

If you have a daughter with Rett Syndrome, a better resource is the virtual treatise on Rett Syndrome by Kathy Hunter,New Rett Syndrome Handbook, 2nd Edition (ISBN-10: 0977064409 ISBN-13: 978-0977064403)which can be preordered and is expected to ship shortly.Kathy Hunter is not only the author but founded the International Rett Syndrome Association (IRSA) in 1984 with friends and families with individuals with Rett Syndrome. IRSA's first office was Kathy's kitchen table. I am privileged to have met Kathy & her daughter Stacie who will be 33 in May 2007. Kathy's passion, motivation & drive created an organization which is one of the only real resources for families with a daughter who has Rett Syndrome. A test to determine Rett Syndrome was only developed in December 1999. Rett Syndrome affects only 1 in every 10,000 to 15,000 girls. Our daughter has Rett Syndrome. When she was first diagnosed we were shocked and terrified, which over time turned to anger and frustration. Now we believe we are proactive and outspoken, although our effects pale to those of Kathy Hunter. Her book & and her organization IRSA are a must for anyone with a daughter with Rett Syndrome. The first edition, (ISBN-10: 0966952804 ISBN-13: 978-0966952803) which is still available new from IRSA, although outdated by recent developments, is well worth reading even if you pre-order the second edition from IRSA. Having seen and read parts of the not yet published second edition, I can say it is even better, greatly expanded & updated. ... Read more

Product Description
In March 2001, the National Institutes of Health issued the following warning: "The number of Web sites offering health-related resources grows every day. Many sites provide valuable information, while others may have information that is unreliable or misleading." Furthermore, because of the rapid increase in Internet-based information, many hours can be wasted searching, selecting, and printing. Since only the smallest fraction of information dealing with Rett syndrome is indexed in search engines, such as www.google.com or others, a non-systematic approach to Internet research can be not only time consuming, but also incomplete. This book was created for medical professionals, students, and members of the general public who want to conduct medical research using the most advanced tools available and spending the least amount of time doing so. ... Read more

Book Description
This up-to-date electronic book on CD-ROM provides the best collection available anywhere of official Federal government information and documents on the subject of degenerative nerve diseases, including: Adrenoleukodystrophy, Leukodystrophy, Rett Syndrome, Canavan Disease, Ataxias, and more. This CD-ROM uses next-generation search technology that allows complete indexing and makes all files on the disc fully searchable. For patients, practical information is provided in clearly written patient education documents. For medical professionals, doctor reference tools and texts have detailed technical information and clinical background material.

This thoroughly researched collection presents vital information from many authoritative sources: National Institutes of Health (NIH), Centers for Disease Control (CDC), Food and Drug Administration, and the National Institute of Neurological Disorders and Stroke (NINDS). Contents include clinical and medical information, with information on signs, symptoms, nutrition, testing, diagnosis, treatment, and more.

In addition, as a bonus we have included an encyclopedic collection of general medical and health documents - thousands of pages with extensive material from the CDC and NIH on hundreds of diseases and health topics from A to Z, along with FDA drug and medical publications, government consumer healthcare tips, disease prevention programs, dietary guidelines, and travelers' health information. Since navigating the Internet to find additional non-governmental medical information can be confusing, we've also provided our exclusive "Guide to Leading Medical Websites" with updated links to 73 of the best sites for medical information! By using weblinks on the CD-ROM, you can quickly check for the latest clinical updates directly from the government.

This CD-ROM has over 38,000 pages reproduced using Adobe Acrobat PDF software and Reader software is included. Advanced search and indexing features are built into our reproduction, providing a complete full-text index. This enables the user to search all the files on the disk at one time for words or phrases using just one search command! The Acrobat cataloging technology adds enormous value and uncommon functionality to this impressive collection of government documents and material. There is no other reference that is as fast, convenient, comprehensive, and portable!

Our CD-ROMs are privately-compiled collections of official public domain U.S. government files and documents - they are not produced by the federal government. They are designed to provide a convenient user-friendly reference work, utilizing the benefits of the Acrobat format to uniformly present thousands of pages that can be rapidly reviewed or printed without untold hours of tedious searching and downloading. This book-on-a-disc makes a superb reference work and educational tool for patients and their families, physicians, and other medical professionals. (Information on this CD-ROM is NOT a substitute for professional medical advice; of course, readers are urged to consult with a professional health care provider for any suspected illness.) ... Read more

Book Description

Information on many genetic disorders, and the frequent new findings on them, has been extremely difficult to come byuntil now. The Gale Encyclopedia of Genetic Disorders addresses the need for current, hard-to-find facts on emerging discoveries. The two-volume Encyclopedia, presented in a single alphabetical sequence, provides clear, complete information on genetic disorders, including conditions, tests, procedures, treatments and therapies, in articles that are both comprehensive and easy to understand, in language accessible to laypersons. The articles are arranged in a standardized format for quick comparison and ease of use, while non-disorder topics are covered in detail with extended entries. Students will want to consult the Gale Encyclopedia of Genetic Disorders for useful information on a range of well known disorders, including Down Syndrome, Trisomy, Hemophilia and Tourette Syndrome, and rarely seen diseases such as Meckel Syndrome, Neuraminidase Deficiency and Phenylketonuria.

Book Description
This digital document is an article from Family Practice News, published by International Medical News Group on December 1, 1999. The length of the article is 6546 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available in your Amazon.com Digital Locker immediately after purchase. You can view it with any web browser.

Citation Details
Title: Genetic Test for Rett Syndrome Now Available.
Author: Barbara Baker
Publication: Family Practice News (Magazine/Journal)
Date: December 1, 1999
Publisher: International Medical News Group
Volume: 29Issue: 23Page: 7

Distributed by Thomson Gale ... Read more

Book Description

Targeted to patients, their families and allied health students, The Gale Encyclopedia of Neurological Disorders provides in-depth coverage of neurological diseases and disorders, including stroke, multiple sclerosis, Parkinson disease, Tourette Syndrome, Alzheimer's disease, cerebral palsy, vertigo, amnesia and epilepsy. Related topics include communication aids, electric personal assistive mobility devices, medications for treating neurological diseases and conditions, understanding the needs of Alzheimer patient caregivers and more. This two-volume set provides an alternative to resources that either fail to explore neurological disease in any depth and or do so at a level not appropriate for students and general readers.

Book Description
This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Rett syndrome. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Rett syndrome.If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages.Download Description
This is a 3-in-1 reference book. It gives a complete medical dictionary covering hundreds of terms and expressions relating to Rett syndrome. It also gives extensive lists of bibliographic citations. Finally, it provides information to users on how to update their knowledge using various Internet resources. The book is designed for physicians, medical students preparing for Board examinations, medical researchers, and patients who want to become familiar with research dedicated to Rett syndrome.If your time is valuable, this book is for you. First, you will not waste time searching the Internet while missing a lot of relevant information. Second, the book also saves you time indexing and defining entries. Finally, you will not waste time and money printing hundreds of web pages. ... Read more

Book Description

The Gale Encyclopedia of Mental Disorders is a comprehensive two-volume set providing detailed information on mental disorders and conditions, in an easy-to-use format. It includes entries for all 150 disorders classified in the Diagnostic and Statistical Manual of Mental Disorders, and also features entries for prescription, alternative and over-the-counter drugs, as well as the various therapies used to treat mental disorders.

Book Description
Rett disorder, first described by Andreas Rett in 1966, is a condition which involves the functions on which intelligence and expression depend.It is probably the most common genetic disorder encountered in profoundly intellectually disabled females.Its many manifestations include epilepsy, scoliosis, nutritional difficulties, and disorders of mood and movement.This book provides an up-to-date account of current research into the disorder at a time when the causative mutations have just been discovered on the MeCP2 gene. The first section of the book presents the clinical signs and the latest research into the genetic, neuro- anatomical and neuro-chemical aspects of Rett disorder.The second section moves on to deal with the neuro-physiological research, concentrating on the autonomic system, which is deeply implicated in the disease mechanisms.The final section of the book examines the behavioural and psychological features of Rett disorder and discusses issues relating to communication.The chapters are written by a distinguished, international team of experts, all currently active in research.The contributions bring our understanding of the Rett disorder right up-to-date, as the study of the condition moves from an era of description into a time when there are real possibilities for beneficial interventions. ... Read more

Product Description
The Purpose of this publication is to circulate the most up to date information on Rett Syndrome. In words you can understand from those who understand ... Read more

Customer Reviews (1)

Kathy Hunter is not just the author...
Kathy Hunter is not only the author but founded the International Rett Syndrome Association (IRSA) in 1984 with friends and families with individuals with Rett Syndrome. IRSA's first office was Kathy's kitchen table.I am privileged to have met Kathy & her daughter Stacie who will be 33 in May 2007.Kathy's passion, motivation & drive created an organization which is one of the only real resources for families with a daughter who has Rett Syndrome.They have copies of the first edition book.A test to determine Rett Syndrome was only developed in December 1999.Rett Syndrome affects only 1 in every 10,000 to 15,000 girls.Our daughter has Rett Syndrome.When she was first diagnosed we were shocked and terrified, which over time turned to anger and frustration.Now we believe we are proactive and outspoken, although our effects pale to those of Kathy Hunter.Her book & and her organization IRSA are a must for anyone with a daughter with Rett Syndrome.The first edition, although outdated by recent developments, is well worth reading even if you pre-order the second edition from IRSA.Having seen and read parts of the not yet published second edition, I can say it is even better, greatly expanded & updated. ... Read more

Product Description
This is the newest in the series of texts about Rett Syndrome. It is written for anyone to understand. This is a very comprehensive book that covers all aspects of the syndrome. ... Read more