ICON Health Publications
Official Health Sourcebooks
   
Search ICON Health Titles:      

 

The Official Parent's Sourcebook
on

HOLOPROSENCEPHALY

(Alobar Holoprosencephaly; Arhinencephaly; Familial Alobar Holoprosencephaly; Holoprosencephaly Malformation Complex; Holoprosencephaly Sequence; Lobar Holoprosencephaly; Semilobar Holoprosencephaly)

 

Revised and Updated for the Internet Age

 

P

A

P

E

R

B

A

C

K

Paperback Book

Paperback Book

Order by phone:

800-843-2665 (within USA)

1-201-272-3651 (from outside USA)


E

B

O

O

K

 
Pages  :  156
Price  :  $28.95(USD)
ISBN  :  0597834962
Published  :  2002
 
 
   Synopsis
 

A comprehensive manual for anyone interested in self-directed research on Holoprosencephaly. Fully referenced with ample Internet listings and glossary.

 
   Related Conditions/Synonyms
 

Alobar Holoprosencephaly; Arhinencephaly; Familial Alobar Holoprosencephaly; Holoprosencephaly Malformation Complex; Holoprosencephaly Sequence; Lobar Holoprosencephaly; Semilobar Holoprosencephaly

 
 

 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 holoprosencephaly (also Alobar Holoprosencephaly; Arhinencephaly; Familial Alobar Holoprosencephaly; Holoprosencephaly Malformation Complex; Holoprosencephaly Sequence; Lobar Holoprosencephaly), 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 holoprosencephaly. 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.

 

 

 Table of Contents

 

Introduction

Overview

Organization

Scope

Moving Forward

PART I: THE ESSENTIALS

Chapter 1. The Essentials on Holoprosencephaly: Guidelines

Overview

What Are Cephalic Disorders?

What Are the Different Types of Cephalic Disorders?

Less Common Cephalies

What Research Is Being Done?

Where Can I Go for More Information?

What Is Holoprosencephaly?

Is There Any Treatment?

What Is the Prognosis?

What Research Is Being Done?

For More Information

More Guideline Sources

Vocabulary Builder

Chapter 2. Seeking Guidance

Overview

Associations and Holoprosencephaly

Finding More Associations

Finding Doctors

Finding a Neurologist

Selecting Your Doctor

Working with Your Child’s Doctor

Broader Health-Related Resources

PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL

Chapter 3. Studies on Holoprosencephaly

Overview

The Combined Health Information Database

Federally-Funded Research on Holoprosencephaly

E-Journals: PubMed Central

The National Library of Medicine: PubMed

Vocabulary Builder

Chapter 4. Books on Holoprosencephaly

Overview

Book Summaries: Online Booksellers

Chapters on Holoprosencephaly

General Home References

Vocabulary Builder

Chapter 5. Physician Guidelines and Databases

Overview

NIH Guidelines

NIH Databases

Other Commercial Databases

The Genome Project and Holoprosencephaly

Specialized References

Vocabulary Builder

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 Holoprosencephaly

Additional Web Resources

General References

Appendix C. Researching Nutrition

Overview

Food and Nutrition: General Principles

Finding Studies on Holoprosencephaly

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

ONLINE GLOSSARIES

Online Dictionary Directories

HOLOPROSENCEPHALY GLOSSARY

General Dictionaries and Glossaries

INDEX

 
 

 Excerpt (Introduction)

 

Overview

Dr. C. Everett Koop, former U.S. Surgeon General, once said, “The best prescription is knowledge.” The Agency for Healthcare Research and Quality (AHRQ) of the National Institutes of Health (NIH) echoes this view and recommends that all parents incorporate education into the treatment process. According to the AHRQ:

Finding out more about your [child’s] condition is a good place to start. By contacting groups that support your [child’s] condition, visiting your local library, and searching on the Internet, you can find good information to help guide your decisions for your [child’s] treatment. Some information may be hard to find—especially if you don’t know where to look.

As the AHRQ mentions, finding the right information is not an obvious task. Though many physicians and public officials had thought that the emergence of the Internet would do much to assist parents 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 parent Internet usage rates. Parents frequently enter their children’s 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 children through sound therapies. The Official Parent’s Sourcebook on Holoprosencephaly has been created for parents who have decided to make education and research an integral part of the treatment process. The pages that follow will tell you where and how to look for information covering virtually all topics related to holoprosencephaly, 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 holoprosencephaly.

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. Since we are working with ICON Health Publications, hard copy Sourcebooks are frequently updated and printed on demand to ensure that the information provided is current.

In addition to extensive references accessible via the Internet, every chapter presents a “Vocabulary Builder.” Many health guides offer glossaries of technical or uncommon terms in an appendix. In editing this sourcebook, we have decided to place a smaller glossary within each chapter that covers terms used in that chapter. Given the technical nature of some chapters, you may need to revisit many sections. Building one’s vocabulary of medical terms in such a gradual manner has been shown to improve the learning process.

We must emphasize that no sourcebook on holoprosencephaly should affirm that a specific diagnostic procedure or treatment discussed in a research study, patent, or doctoral dissertation is “correct” or your child’s best option. This sourcebook is no exception. Each child is unique. Deciding on appropriate options is always up to parents in consultation with their children’s physicians and healthcare providers.

Organization

This sourcebook is organized into three parts. Part I explores basic techniques to researching holoprosencephaly (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other parent networks dedicated to holoprosencephaly. It also gives you sources of information that can help you find a doctor in your local area specializing in treating holoprosencephaly. Collectively, the material presented in Part I is a complete primer on basic research topics for holoprosencephaly.

Part II moves on to advanced research dedicated to holoprosencephaly. Part II is intended for those willing to invest many hours of hard work and study. It is here that we direct you to the latest scientific and applied research on holoprosencephaly. When possible, contact names, links via the Internet, and summaries are provided. It is in Part II where the vocabulary process becomes important as authors publishing advanced research frequently use highly specialized language. In general, every attempt is made to recommend “free-to-use” options.

Part III provides appendices of useful background reading covering holoprosencephaly or related disorders. The appendices are dedicated to more pragmatic issues facing parents. Accessing materials via medical libraries may be the only option for some parents, so a guide is provided for finding local medical libraries which are open to the public. Part III, therefore, focuses on advice that goes beyond the biological and scientific issues facing children with holoprosencephaly and their families.

Scope

While this sourcebook covers holoprosencephaly, doctors, research publications, and specialists may refer to your child’s condition using a variety of terms. Therefore, you should understand that holoprosencephaly is often considered a synonym or a condition closely related to the following:

  • Alobar Holoprosencephaly

  • Arhinencephaly

  • Familial Alobar Holoprosencephaly

  • Holoprosencephaly Malformation Complex

  • Holoprosencephaly Sequence

  • Lobar Holoprosencephaly

  • Semilobar Holoprosencephaly

In addition to synonyms and related conditions, physicians may refer to holoprosencephaly using certain coding systems. The International Classification of Diseases, 9th Revision, Clinical Modification (ICD-9-CM) is the most commonly used system of classification for the world’s illnesses. Your physician may use this coding system as an administrative or tracking tool. The following classification is commonly used for holoprosencephaly:

  • 742.2 reduction deformities of brain

For the purposes of this sourcebook, we have attempted to be as inclusive as possible, looking for official information for all of the synonyms relevant to holoprosencephaly. You may find it useful to refer to synonyms when accessing databases or interacting with healthcare professionals and medical librarians.

Moving Forward

Since the 1980s, the world has seen a proliferation of healthcare guides covering most illnesses. Some are written by parents, patients, or their family members. These generally take a layperson’s approach to understanding and coping with an illness or disorder. They can be uplifting, encouraging, and highly supportive. Other guides are authored by physicians or other healthcare providers who have a more clinical outlook. Each of these two styles of guide has its purpose and can be quite useful.

As editors, we have chosen a third route. We have chosen to expose you to as many sources of official and peer-reviewed information as practical, for the purpose of educating you about basic and advanced knowledge as recognized by medical science today. You can think of this sourcebook as your personal Internet age reference librarian.

Why “Internet age”? When their child has been diagnosed with holoprosencephaly, parents will often log on to the Internet, type words into a search engine, and receive several Web site listings which are mostly irrelevant or redundant. Parents are left to wonder where the relevant information is, and how to obtain it. Since only the smallest fraction of information dealing with holoprosencephaly is even indexed in search engines, a non-systematic approach often leads to frustration and disappointment. With this sourcebook, we hope to direct you to the information you need that you would not likely find using popular Web directories. Beyond Web listings, in many cases we will reproduce brief summaries or abstracts of available reference materials. These abstracts often contain distilled information on topics of discussion.

While we focus on the more scientific aspects of holoprosencephaly, there is, of course, the emotional side to consider. Later in the sourcebook, we provide a chapter dedicated to helping you find parent groups and associations that can provide additional support beyond research produced by medical science. We hope that the choices we have made give you and your child the most options in moving forward. In this way, we wish you the best in your efforts to incorporate this educational approach into your child’s treatment plan.

The Editors

 
 

 Words Defined in the Vocabulary Builders

 
 
     
A Gastrostomy Prosencephalon
Alkaloid H Proteins
Alleles Hernia Psychomotor
Amnion Hormones Q
Analogous Hybridization Quadriplegia
Assay Hydrocephalus R
B Hypertonia Receptor
Bacteria Hypokinesia Retina
Bilateral Hypotonia Retinoids
Biochemical I Riboflavin
Biosynthesis Infantile Rubella
C Insulin S
Capsules L Sclerosis
Carbohydrate Lesion Seizures
Carcinoma Lethal Selenium
Cardiovascular Lip Shunt
Caudal M Skeletal
Cerebellum Malformation Somites
Cerebral Mandible Spastic
Cerebrospinal Membrane Spectrum
Cholesterol Menarche Symptomatic
Chromosomal Mentors T
Chronic Mesoderm Teratogenic
Consciousness Molecular Teratogens
Cortex N Thermoregulation
Cranial Neural Thyroxine
Cyst Neurons Tomography
D Niacin Tone
Degenerative Notochord Topical
Diarrhea O Torticollis
Dorsal Ovary Transillumination
Dysgenesis Overdose Trisomy
Dysplasia P U
E Paralysis Ultrasonography
Electroporation Parasitic V
Embryo Parietal Vascular
Epithelium Phenotype Ventral
F Polymorphic Viral
Facial Posterior Z
Femoral Postnatal Zebrafish
G Potassium
Gastrointestinal Prenatal
 
 
 
P

A

P

E

R

B

A

C

K

Paperback Book

Paperback Book

Order by phone:

800-843-2665 (within USA)

1-201-272-3651 (from outside USA)


E

B

O

O

K

 

 

Back