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The Official Parent's Sourcebook on Rett Syndrome. A Revised and Updated Directory for the Internet Age

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Manufacturer: ICON Health Publications
Author: Icon Health Publications
Binding: Paperback
Publication Date: 2002-11-18
Publisher: ICON Health Publications
Label: ICON Health Publications
Number Of Pages: 184

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Editorial Review
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.
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Customer Reviews

A better choice would be ...

2007-03-29
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.