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ePub The Official Parent's Sourcebook on Osteosarcoma: A Revised and Updated Directory for the Internet Age download

by Icon Health Publications

ePub The Official Parent's Sourcebook on Osteosarcoma: A Revised and Updated Directory for the Internet Age download
Icon Health Publications
ICON Health Publications (December 17, 2002)
Medicine & Health Sciences
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Icon Health Publications. The title of this book includes the word official. Following an introductory chapter, the sourcebook is organized into three parts.

Although it gives information useful to doctors. 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.

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Given parents' increasing sophistication in using the Internet, abundant .

Given parents' increasing sophistication in using the Internet, abundant references to reliable Internet-based resources are provided throughout this sourcebook.

This sourcebook has been created for parents who have decided to make . The title of this book includes the word official

The title of this book includes the word official.

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 osteosarcoma, 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 osteosarcoma. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Osteosarcoma: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Osteosarcoma; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Osteosarcoma; Chapter 5. Patents on Osteosarcoma; Chapter 6. Books on Osteosarcoma; Chapter 7. Multimedia on Osteosarcoma; Chapter 8. Physician Guidelines and Databases; Chapter 9. Dissertations on Osteosarcoma; 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; Appendix F. Talking with Your Child about Cancer; ONLINE GLOSSARIES; OSTEOSARCOMA GLOSSARY; INDEX. Related topics include: Histiocytoma bone, Osteogenic, Osteogenic sarcoma, osteosarcoma.
  • There are few books on the market written for parents and educators about the learning disability dysgraphia that are currently in print. My interest in this topic is that I am a homeschooling mother of a child who I strongly suspect may have dysgraphia. I wanted to learn more via a non-fiction book from a credible author. The title of this book sounded impressive to me.

    I found this book by doing book searches on and at the time I purchased it there were no customer book reviews to help me figure out if this book was a worthwhile one to purchase. Based on the product description provided by the publisher I thought the book sounded worthwhile and paid about double what typical non-fiction books for parents cost. I had high hopes for the book.

    I was so excited when the book arrived and I settled in to read it when I was alone and had time to read carefully without interruption. I hoped for some solid information and to learn what studies showed and how the condition is treated and how it can be cured. The first thing I noticed was a lot of white space on the pages and large font, so the editors were stretching to get the book to its 83 pages, it seems to me. Well I figured it would not matter if the book was skimpy if what was there was very useful.

    I was instantly deflated when I realized what this book is. This is not a typical non-fiction book where authors write about non-fiction information to inform the reader. The book opens with a very simple definition of dysgraphia which is JUST a quote from the US Government's NIH department. That is the largest piece of information that the authors give us about dysgraphia itself! The authors did not even write that themselves. To learn anything else, have to go digging on our own with the Internet.

    The beginning of the book starts off saying that parents of children with a learning disability should be careful where they get their information from and they should not use Internet search engines to find information as the source may not be credible or accurate. Instead what these two editors do is give some websites that publish medical studies and tell you, the parent, to get on the Internet and start searching for online studies to decipher.

    If you read the long subtitle very carefully you will see it says "a reference manual for self-directed patient research" and that on the cover the authors are credited as being editors.

    Oddly the editors do not give a list of synonyms for the term dysgraphia. Yet on page 16 they tell us to do a search on a website for dysgraphia or a synonym.

    The editors have a short blurb about how to find a doctor and how to find a neurologist. Oddly they never explain why a child would need a neurologist, if all children with a dysgraphia label need to consult with a neurologist or what a neurologist actually would do with or for a child with dysgraphia. I found that so strange!

    Some of the information is so basic it is insulting. An example is on page 19 it says when you have a list of doctors you think you want your child to see, call them and ask if they take your insurance and if not, ask what they charge. Then if you want to see that doctor to schedule an appointment. DUH!! I found that advice so basic that it was insulting and patronizing. The idea that someone who would do all their own research using the Internet would not know how to phone a doctor and ask about insurance coverage and to make an appointment is just ridiculous.

    Additionally other information is thrown in that seems to have nothing to do with the topic of dysgraphia. I can't help but suspect this was added to make the word count longer so this would expand from being a booklet to a book. Pages 30 and 31 give a list of NIH databases that have nothing to do with dysgraphia, such as Cancer, history of medicine and `space life' to name just three.

    A number of pages are about the use of prescription medicines but it never tells if all children with dysgraphia need to take medications, what the different medications are and how they help or cure dysgraphia. I was completely confused by that chapter which gives only simple, general information such as tell the doctor what other medications the child is taking and don't be afraid to `bother' the doctor about questions about the prescribed drugs. When I went in search of what medications are used for dysgraphia I could not find any and in fact found a fact sheet on dysgraphia at the West Virginia University School of Medicine's site's fact sheet for dysgraphia that says there are no medications used for the treatment of dysgraphia!!

    The editors also included a statement under the title "A Final Warning" to be wary of all alternative treatments yet they don't say much more than that to caution us about certain known alternative treatments like energy healing. I think they should have said something like, "X type of therapy offers to do X service and says it will cure dysgraphia by doing Y but this has not been proven in medical studies to be effective". Now that is useful information. Later on pages 49-57 general explanations of a few `alternative medicine' fields are explained but again no specific information or warnings are given about dysgraphia treatment within these fields. On the Internet I found referneces that massage therapy is used for dysgraphia but that is not on the list of 'alternative' therapies.

    I have heard of occupational therapy being used to treat dysgrapia. However that is not mentioned in this book at all, which was bothersome. Also, that is not in the index, which I tried using to double-check that fact.

    Another section gives a list of medical schools and suggests that we go to those medical libraries at the medical schools and do research in person. Are you kidding me? Laypeople who are not currently students at those medical schools are, from my experience, not allowed to use those libraries.

    What we parents want and need is a good non-fiction book on dysgraphia that tells accurate infomration written for laypeople!

    Using some websites given in the book I tried to research some information and didn't find anything of use. The only studies I could find were about people who had some kind of brain trauma that gave them dysgraphia. What I want to know about is children with the learning disability dysgraphia. I also found some abstracts that basically said nothing because they were so vague, so I learned nothing.

    Lastly the index is ridiculous. It has a whopping eleven items on it: auditory, cerebral, chronic, comorbidity, dementia, molecular, neural, neuropsychology, phenotype, pulse, and triage. Where are all the other terms and topics mentioned in the book??

    I was hugely disappointed by this book as I hoped due to the main title that the book would give the information (as typical non-fiction books do). I feel ripped off at having spent money on this book and am returning it to

    So far the most information I've been able to find is from Dianne Craft, however she does not have a book published on this topic. Craft's lecture given at a homeschooling conference gave me hope that some nutritional changes that help children with learning disabilities that are processing disorders combined with occupational therapy that can be done at home can help cure dysgraphia.

    (I intentionally made this review long to try to give numerous reasons to explain my disappointment with the book to justify my point of view.)

  • this book provides little information on Wilms that cant be found entering in keyword "wilms" into a google search. infact i would suggest that you are 100x beter off doing just that. Its not comprehensive and is for the most part already outdated. As a parent of a child who is battling Wilms Tumor now, i was hoping this book would provide insight into diet, exercise regimen, minimising the effects of her threapy, etc. but its a bunch of incredibly long web addresses that dont work most of the time. complete waste of my funds which i so desperately need now to pay for health care. they slapped a nice, very clinical and offical cover on garbage. parents of those with Wilms, from someone who knows EXACTLY what you are going through and what your searching the web for, aviod this book, use the cash and go buy your child an ice cream cone ( we are vegitarian and eat incredibly healthty so one ice cream cone wont hurt) your child will thank you, you will have 15 minutes peace of mind and will enjoy seeing your child enjoy themselves..and will not have to endure the complete and utter dissapointment that is this "guide."

    UPDATE: 12/18/2015 After a complete left nephrectomy following her diagnosis, observation and then relapse in the lung, 24 weeks of Chemotherapy, and IMRT radiation, my daughter is 100% healed and off treatment, CANCER FREE for the last 4 YEARS with ZERO side effects. Praise Almighty GOD! There is HOPE. YOU CAN GET THROUGH THIS. Your child will live. God has the power heal, all he requires is your faith.

  • DO NOT waste your money on this book!

    I was excited to come across this book, as I've been researching dysgraphia, but have found little in-depth information.This book provides nothing more than suggestions of where you might find the most basic information about learning disabilities--it suggests some learning disability websites and books you could easily find on your own in a 5-minute google search.

    The author/and or publisher should be ashamed to call this a book--there is not a single piece of useful information, and I could have thrown it togethor in 30 minutes myself!

  • This book did not have any information specific to Dysgraphia. It only told you how to do research on the subject. Don't waste your money unless you have never done any type of basic research before.

  • This book didn't tell me anything at all. I was sorry I bought it and even sorry I waited so long for it to arrive.

  • I thought this would give me a little more information about Chiari Malformation.

    It doesn't!

    It really just tells you where to look on the internet for it. It is out of date (2003).

    I guess this would be helpful to the parent that does not know how to use a search engine.

    There is a serious need for a book on this birth defect!