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Resources

CHARGE Syndrome:
A Management Manual for Parents

©2002 - Edited by Meg Hefner, M.S. & Sandra Davenport, M.D.

The manual below is an interactive publication in Adobe PDF Format. If you do not already have the free reader installed, download Acrobat Reader. There are sections directed to the professionals and others to the parents. Includes a Medical Visit Pad.

(Available in Spanish if ordered offline.)

CHARGE Manual Index, Version 2.1

I. Introduction

• A. Welcome to Version 2.1 (2 pages)
• B. Registration Information (1 page)
• C. History of the CHARGE Syndrome Foundation, Inc. and the Manual (2 pages)
• D. Stories from Families (30 pages)

II. Priorities

• What Is Most Important For Your Child (1 page)

III. Medical Aspects of CHARGE

• Introduction to Medical Section (1 page)
• Medical Visit Pad/Record Keeping (3 pages)
• Overview for Physicians (2 pages)
• Diagnosis, Genetics, and Prenatal Diagnosis (10 pages)
• Cranial Nerves and Brain (5 pages)
• Sensory Loss and Development (4 pages)
• Eyes (5 pages)
• Ears and Hearing (9 pages)
• Choanal Atresia (5 pages)
• Cleft Lip and Palate (6 pages)
• T-E Fistula and Esophageal Atresia (5 pages)
• Airway (2 pages)
• Swallowing and Feeding (6 pages)
• Heart (6 pages)
• Renal and Urinary (6 pages)
• Genital/Endocrine (7 pages)
• Muscles and Bones (4 pages)
• Growth (6 pages)
• Adolescence (3 pages)
• Life Expectancy (6 pages)

IV. Development and Education in CHARGE

• 1. Introduction to the Development and Learning (1 page)

• 2. The Multiple Influences on Development and Learning (13 pages)
  • A. Impact of Medical Features on Development
  • B. Physical Influences on Development
  • C. Influence of Sensory Loss: Communication Bubble
  • D. Behavior as Communication

• 3. Minnesota Development Timeline (6 pages)

• 4. Teams (13 pages)
  • A. Introduction to Teams
  • B. Teams and Resources
  • C. Educational Teams and Your Educational Team
  • D. Circle of Friends
  • E. Person-Centered Planning

• 5. Assessment (13 pages)
  • A. Assessment of Individuals with CHARGE
  • B. Psychoeducational Evaluation
  • C. IEP IFSP
  • D. Do's and Dont's for Educators

• 6. Plans of Action and Therapies (39 pages)
  • A. Orientation and Mobility
  • B. Sensory Integration
  • C. Physical Therapy and Occupational Therapy
  • D. Physical Education and Recreation

• 7. Finding Help (2 pages)

V. GLOSSARY

VI. RESOURCES

• A. CHARGE Syndrome
• B. DB-Link
• C. Helpful Web
• D. Others

Download Entire Manual (269 Pages, 14 MB, PDF Format)

Future Additions to the Manual

The newsletters above are in the Adobe PDF format. If you do not have the free PDF program, you can download it here.