The official parent's sourcebook on Rett syndrome : [a revised and updated directory for the Internet age : a reference manual for self-directed patient research

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. 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, an