Product Description
This book is for parents who just received a diagnosis of Rett Syndrome, their relatives, concerned friends and interested medical professionals.The book explains first hand reactions to the initial diagnosis as well as some coping mechanisms and suggestions for life strategies.Part of all sales go to Rett Syndrome research.Kim Isaac Greenblatt currently lives in West Hills, California. ... Read more

Customer Reviews (2)

Not enough about Rett!
I can not recommend this book as it is just not good enough.From reading it, one could assume that it was written for children or teenagers, not parents dealing with the big shock of this diagnosis.
After reading it, I know a lot about how this specific father dealt with this shock, but not that much about his girl diagnosed with Rett.And at this time we are so hungry in learning about other Rett girls, their symptoms, their daily life, their medical complications etc.IT was mentioned, like all in one sentence, while spending pages telling us that this is not a punishment from god, or because you ate pork!Come on!
As always, the little said about the actual story of his daughter was interesting,but somehow not enough.

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

Product Description
The brand new edition of this unique book describes the difficulties and challenges of girls and women with Rett Syndrome, and proposes solutions that can help them in everyday life. Written from an educational perspective, and based on extensive practical, real-life experience, it also takes into consideration living conditions as a whole to provide practical and effective help for all those involved in the care of those with Rett Syndrome. Rett Syndrome is a severe neurological disorder with no cure affecting 1 out of every 10,000-15,000 female births worldwide. It is now known to result from a chromosomal defect that leads to problems such as mental retardation, serious motor handicaps, epileptic seizures, and difficulties with communication. This syndrome is found only in girls, and usually becomes noticeable during their second year of life. In this new edition, the chapters on intelligence and understanding, learning and communication have been elucidated and deepened. There are also some new sections on digital pictures, computers, and sensory environments."Understanding Rett Syndrome" is primarily intended for people close to those with Rett syndrome, including teachers, therapists and parents, but should be valuable to anyone involved with children with mental and functional disorders. ... Read more

Customer Reviews (2)

Must Read Understanding Your Daughter
If your daughter or grand-daughter has this dehabilitating syndrome, I strongly recommend you read this book.I am a grandmother whos grand-daughter has Rett Syndrome. Not knowing the unknown will hamper, push you away, make you wonder what's she's thinking and what for you to do?This book will give you so much advise, and answer the unknowns, and give you more insentives to your knowings. This book will give answers that doctors cannot even tell you. (They most likely have not walked in your footsteps.) How the family will cope, together, with your daughter. This book is a must for any and all families dealing with a female with Rett Syndrome. I cannot stress it enough. Anyone close to her, should take the time to read this knowledgeable, factual and inspiring book.I gave this book to the mother, and told her that she MUST read it.I promise you, that you'll see light at the end of a darken pit. This is why I gave this book 5 stars.

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

Product Description
Offering accessible advice on the special educational needs of girls with Rett syndrome, this volume aims to assist teachers in developing a working knowledge of the syndrome and suggests particular strategies in planning a curriculum which may help overcome the specific difficulties within the diagnosis. For parents, the book provides a picture of the special school system in this country and the educational implications for their daughters. It should also be of interest to those working with pupils with a more general type of profound learning disability. ... Read more

Customer Reviews (3)

A MUST OWN book
This is the most comprehensive book I have I have in my arsenal!IT is a must own for parents of a child with any form of developmental delay, neurological issues.

Kathy Hunter is more than 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. Decades ago Stacie was the first girl diagnosed with Rett Syndrome in the US.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 new copies of this 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-ordered 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.

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 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

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.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

Product Description
This monograph is a contribution to the growing literature on genetic medicine. Based on original ethnographic research with scientists, clinicians and families, we use our examination of one particular condition (Rett syndrome) to illuminate more general issues concerning the construction and interpretation of diseases and syndromes. It derives from research with a specialist team of clinicians and scientists, and a series of families referred with a potential diagnosis of Rett syndrome. The research, funded by the Healthcare Trust, documents the scientific, clinical, patient and family experiences over a three-year period. This work is situated in a broader body of work and involvement in medical genetics in the UK and internationally. The monograph builds on the authors' extensive research on genetic syndromes and dysmorphology (developmental problems), as well as the authors' previously published monograph, Feathersone, Atkinson, Bharadwaj and Clarke, Risky Relations (Berg 2005).The book is built around a case-study of Rett syndrome, its definition, recognition, description and diagnosis.Rett syndrome is a developmental disorder that causes severe and profound learning disabilities. Although Rett syndrome itself is rare, it is one of some 2,000 such syndromes. Moreover, its genetic basis has recently been linked to the much broader Autism spectrum. From a sociological or anthropological point of view, Rett Syndrome is of considerable interest: it is a clinical entity that is undergoing transformation in the light of recent post-genomic research. Traditionally, such syndromes have been diagnosed clinically, but increasingly genetic technologies are having an impact on the diagnosis, description and classification of conditions. Rett Syndrome is thus a key exemplar of the implications of genetic medicine that are far-reaching and extend well beyond this particular syndrome. ... Read more

Product Description
This book has been created for parents who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells parents where and how to look for information covering virtually all topics related to rett syndrome (also Autism, Dementia, Ataxia, and Loss of Purposeful Hand Use), 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. Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook. Where possible, guidance is provided on how to obtain free-of-charge, primary research results as well as more detailed information via the Internet. E-book and electronic versions of this sourcebook are fully interactive with each of the Internet sites mentioned (clicking on a hyperlink automatically opens your browser to the site indicated). Hard-copy users of this sourcebook can type cited Web addresses directly into their browsers to obtain access to the corresponding sites. In addition to extensive references accessible via the Internet, chapters include glossaries of technical or uncommon terms. ... 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 7 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).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 turned 35 in May 2009. 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), although outdated by recent developments, is well worth reading even if you order the second edition from IRSA. Having seen and read parts of the second edition before publication, I can say it is even better, greatly expanded & updated. ... Read more

Product Description
The Rett Syndrome Medical Guide is a publication which has been designed to better help readers understand Rett Syndrome. This Qontro Medical Guide has been designed with the reader in mind, and is a useful information source for readers at all levels looking to learn more about Rett Syndrome. The Rett Syndrome Medical Guide is highly recommended for those interested in understanding and learning more about Rett Syndrome. ... Read more

Customer Reviews (2)

Don't bother
This is just a verbatim print-out of the Wikipedia article, which you can get for free.While this is probably legal under Wikipedia's permissive license, there's no point spending money on this, even if you want it on paper.Just print it out yourself for about $0.50 in ink and paper costs.

Short, but informative
I thought this book would be a little longer, but there was no shortage of information. This is the information my daughter's doctor's SHOULD have been able to tell me. ... Read more

Product Description
Chapters: Asperger Syndrome, Fragile X Syndrome, Hyperlexia, Rett Syndrome, Sensory Integration Dysfunction, Autism Therapies, Heritability of Autism, Causes of Autism, Mmr Vaccine Controversy, Epidemiology of Autism, Sociological and Cultural Aspects of Autism, Thiomersal Controversy, Diagnosis of Asperger Syndrome, Autism Rights Movement, Treatment and Education of Autistic and Related Communication Handicapped Children, Sensory Processing Disorder, Historical Figures Sometimes Considered Autistic, Lovaas Technique, List of People on the Autism Spectrum, Lujan-Fryns Syndrome, Conditions Comorbid to Autism Spectrum Disorders, Autistic Enterocolitis, Neurodiversity, Social Stories, List of Fictional Characters on the Autism Spectrum, Refrigerator Mother, History of Asperger Syndrome, Autism Diagnostic Interview-Revised, Lena Foundation, Pivotal Response Therapy, Weak Central Coherence Theory, Lauretta Bender, Qigong Sensory Training, Controversies in Autism, Ryan's Law, Pervasive Developmental Disorder, Combating Autism Act, Autism Spectrum Quotient, Autism Act 2009, Gluten-Free, Casein-Free Diet, Autism Sunday, Picture Exchange Communication System, Video Modeling, Regressive Autism, Childhood Autism Rating Scale, Sensory Defensiveness, Son-Rise, List of Autism-Related Topics, Assessment of Basic Language and Learning Skills, Relationship Development Intervention, Autism Diagnostic Observation Schedule, Hug Machine, Jonathan's Law, Snoezelen, Effects of Equine Assisted Therapy on Autism, Multiple Complex Developmental Disorder, Autistic Pride Day, Echolalia, Developmental Social-Pragmatic Model, Gilliam Asperger's Disorder Scale, Neurotypical, High-Functioning Autism, Lutein-Free Diet, Visual Schedules, Sensory Overload, Children's Health Act, Mind-Blindness, Pronoun Reversal, Rapid Visual Imaging, Fragile X-Associated Tremor/ataxia Syndrome. Source: Wikipedia. Pages: 518. Not illustrated. Free updates online. Purchase includes...More: http://booksllc.net/?id=25 ... Read more

Product 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

Product Description
High Quality Content by WIKIPEDIA articles! Rett syndrome is a neurodevelopmental disorder that is classified as an autism spectrum disorder by the DSM-IV. It was first described by Austrian pediatrician Andreas Rett in 1966. The clinical features include a deceleration of the rate of head growth (including microcephaly in some) and small hands and feet. Repetitive hand movements such as mouthing or wringing are also noted. Girls with Rett syndrome are prone to gastrointestinal disorders and up to 80% have seizures. They typically have no verbal skills, and about 50% of females are not ambulatory. Scoliosis, growth failure, and constipation are very common and can be problematic. Some argue that it is misclassified as an autism spectrum disorder, just as it would be to include such disorders as fragile X syndrome, tuberous sclerosis, or Down syndrome where one can see autistic features. ... Read more

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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.

Product Description
This digital document is an article from Pediatric News, published by International Medical News Group on September 1, 2008. The length of the article is 1052 words. The page length shown above is based on a typical 300-word page. The article is delivered in HTML format and is available immediately after purchase. You can view it with any web browser.

Citation Details
Title: Deciphering the complexities of Rett syndrome.(Special Needs: Realizing Potential)
Author: Sakkubai Naidu
Publication: Pediatric News (Magazine/Journal)
Date: September 1, 2008
Publisher: International Medical News Group
Volume: 42Issue: 9Page: 38(1)

Distributed by Gale, a part of Cengage Learning ... Read more

Product Description
Les achats comprennent une adhésion à l'essai gratuite au club de livres de l'éditeur, dans lequel vous pouvez choisir parmi plus d'un million d'ouvrages, sans frais. Le livre consiste d'articles Wikipedia sur : Syndrome de Rett, Syndrome D'angelman, Surdité D'origine Génétique, Amyotrophie Spinale, Syndrome D'ondine, Syndrome Myopathie à Inclusions - Maladie de Paget - Démence Fronto-Temporale, Syndrome de Mcleod, Neuroferritinopathie, Syndrome de Kugelberg-Welander, Maladie de Werdnig-Hoffman. Non illustré. Mises à jour gratuites en ligne. Extrait : Le syndrome de Rett est une maladie génétique neurologique atteignant les filles et apparaissant après 6 et 18 mois de développement normal chez la petite fille. Le signe le plus distinctif de cette maladie est la disparition des mouvements coordonnées de la main qui sont remplacés par des mouvements répétitifs stéréotypés. Le pédiatre Andreas Rett (1924-1997) est le premier à avoir décrit ce syndrome. Son caractère de maladie génétique a été mis en évidence en 1999. Des mutations du gène MECP2 sont de plus en plus observées chez des individus présentant un syndrome de Rett atypique et précédemment diagnostiqué comme autistique, troubles moyens de l'apprentissage, suspicion clinique de syndrome d'Angelman sans confirmation biologique, retard mental avec tremblement et trouble du tonus. Des garçons présentant des critères cliniques du syndrome de Rett sont connus ; il s'agit soit de garçons dont le caryotype est XXY ou présentant des mutations post-conceptionnelles aboutissant à une mosaïque somatique. Les garçons porteurs de la mutation du gène MECP2 avec un caryotype XY présentent une encéphalopathie sévère à la naissance et meurent avant l'âge de deux ans. Le syndrome de Rett représente la principale cause de retard mental chez la fille dans le monde, sa prévalence varie entre 1/10.000 et 1/22.000 naissance dans les différents pays. La prévalence du syndrome de Rett en France e...http://booksllc.net/?l=fr ... Read more

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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

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