2002 Official Parent's SourceBook on Down Syndrome
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 down 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...
Search in google:
A comprehesive manual for anyone interested in self-directed research on down syndrome. Fully referenced with ample Internet listings and glossary.
Though many physicians and public officials had thought that the emergence of the Internet would do much to assist patients in obtaining reliable information, 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." Since the late 1990s, physicians have seen a general increase in patient Internet usage rates. Patients frequently enter their doctor's offices with printed Web pages of home remedies in the guise of latest medical research. This scenario is so common that doctors often spend more time dispelling misleading information than guiding patients through sound therapies. ... This book has been created for patients who have decided to make education and research an integral part of the treatment process. ... While this sourcebook covers down syndrome, your doctor, research publications, and specialists may refer to your condition using a variety of terms. Therefore, you should understand that down syndrome is often considered a synonym or a condition closely related to the following: Down's syndrome; Mosaic 21 Syndrome; Translocation 21 Syndrome; Trisomy 21; Trisomy 21 Syndrome; Trisomy G.
Introduction Overview Organization Scope Moving Forward PART I: THE ESSENTIALS Chapter 1. The Essentials on Down Syndrome: Guidelines Overview What Is Down Syndrome? The Occurrence of Down Syndrome Down Syndrome and Maternal Age Prenatal Screening for Down Syndrome A Diagnosis of Down Syndrome Down Syndrome and Associated Medical Disorders Newborns Infants and Preschool Children Early Intervention and Education Adolescence Adults with Down Syndrome Down Syndrome in the Workplace Future Directions in Down Syndrome Research Questions and Answers about Down Syndrome Additional Resources for Down Syndrome More Guideline Sources Vocabulary Builder Chapter 2. Seeking Guidance Overview Associations and Down Syndrome Finding More Associations Finding Doctors Finding a Pediatrician Selecting Your Doctor Working with Your Child's Doctor Broader Health-Related Resources Vocabulary Builder Chapter 3. Clinical Trials and Down Syndrome Overview Recent Trials on Down Syndrome Benefits and Risks Keeping Current on Clinical Trials General References Vocabulary Builder PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL Chapter 4. Studies on Down Syndrome Overview The Combined Health Information Database Federally-Funded Research on Down Syndrome E-Journals: PubMed Central The National Library of Medicine: PubMed Vocabulary Builder Chapter 5. Patents on Down Syndrome Overview Patents on Down Syndrome Patent Applications on Down Syndrome KeepingCurrent Vocabulary Builder Chapter 6. Books on Down Syndrome Overview Book Summaries: Federal Agencies Book Summaries: Online Booksellers The National Library of Medicine Book Index Chapters on Down Syndrome Directories General Home References Vocabulary Builder Chapter 7. Multimedia on Down Syndrome Overview Video Recordings Bibliography: Multimedia on Down Syndrome Chapter 8. Periodicals and News on Down Syndrome Overview News Services & Press Releases Newsletters on Down Syndrome Newsletter Articles Academic Periodicals covering Down Syndrome Vocabulary Builder Chapter 9. Physician Guidelines and Databases Overview NIH Guidelines NIH Databases Other Commercial Databases The Genome Project and Down Syndrome Specialized References Chapter 10. Dissertations on Down Syndrome Overview Dissertations on Down Syndrome Keeping Current PART III. APPENDICES Appendix A. Researching Your Child's Medications Overview Your Child's Medications: The Basics Learning More about Your Child's Medications Commercial Databases Contraindications and Interactions (Hidden Dangers) A Final Warning General References Vocabulary Builder Appendix B. Researching Alternative Medicine Overview What Is CAM? What Are the Domains of Alternative Medicine? Can Alternatives Affect My Child's Treatment? Finding CAM References on Down Syndrome Additional Web Resources General References Appendix C. Researching Nutrition Overview Food and Nutrition: General Principles Finding Studies on Down Syndrome Federal Resources on Nutrition Additional Web Resources Vocabulary Builder Appendix D. Finding Medical Libraries Overview Preparation Finding a Local Medical Library Medical Libraries Open to the Public Appendix E. Your Child's Rights and Insurance Overview Your Child's Rights as a Patient Parent Responsibilities Choosing an Insurance Plan Medicaid NORD's Medication Assistance Programs Additional Resources Vocabulary Builder ONLINE GLOSSARIES Online Dictionary Directories DOWN SYNDROME GLOSSARY General Dictionaries and Glossaries INDEX
