Articles About CdLS

Quick Links:
Anesthesia | Behavior | Causes of Death | Dental | Education | Estate Planning | Eyes, Ears & Nose | Family & Emotional Issues | Feeding & Gastroesophageal | Genetics & Diagnosis | Growth | Development | Neurology | Orthopedics | Speech & Language | Therapies | Packets of Information

Anesthesia

1. Anesthesia for People with CDLS by Dr. Aaron Zuckerberg, (.doc) (March 2005)
2. Encounters with Anesthesia by Bruce Cleinman, M.A., (.doc) (March 2005)

Top

Behavior

1. Book: "Self-Injurious Behaviour in Cornelila de Lange Syndrome: A Guide for Parents and Carers" (PDF version of Dr. Chris Oliver's book)
2. Behavior in Cornelia de Lange Syndrome (MS Power Point Presentation--Download free viewer)
3. Management of Anxiety and Aggression
4. Self-Injurious Behavior: The Cornelia de Lange Syndrome
5. Treatment Protocols - Behavior
6. Protocols For Treating Behavior Issues (December 2001)
7. Behavioral Challenges in Children and Adults with CdLS (November 2006)

Top

Causes of Death

1. Facing the Issue of Death - The Family Perspective

Top

Dental

1. Ask the Doctor: Dilantin and Gum Growth
2. Ask the Doctor: Teeth Grinding
3. The Challenges of Dental Care
4. Pediatric Dentistry and Children With Special Needs
5. Pediatric Dentistry and CdLS by Doug K. Clemens, D.M.D. (April 2002)
6. Healthy Smiles

Top

Development

1. Developmental Data on Individuals with the Brachmann-de Lange Syndrome
2. Research Shows all Children with CdLS make Developmental Progress
3. Puberty and Adolescence in CdLS: A Survey of Changes
4. The “Mild” Side of CdLS: The Families’ Perspective
5. Older Individuals With CdLS By Antonie Kline, M.D., CdLS Foundation Medical Director (January 2006)

Top

Education

1. Ask the Doctor: Helping Children With CdLS Stay Focused in School
2. Ask the Doctor: Transitioning Out of the Special Education Classroom
3. Assisting the Social Development of Children with CdLS
4. Communicating with Symbols Promotes Skill Development in Children with CdLS
5. Dr. Lou Brown Advises Parents to Prepare Their Children for Adulthood
6. Educational Techniques to Promote Increased Symbolic Communication and Active Participation
7. Guidelines for Evaluating a Pre-School Program for Children with CdLS
8. Helping Your Child Communicate Using Diaries and Scrapbooks
9. Making the Educational Experience Work
10. Visual Gaze Behaviors in Children with CdLS
11. Limb Differences: Pathways to Independence
12. Special Education in the US
13. Considerations for Using One-To-One Support in School
14. CVI (Cortical/Cerebral Visual Impairment)--What You Should Know

Top

Estate Planning

1. Planning For the Future For Your Loved One With CdLS By By Beth Dixon, District Court Judge (November 2005)

Top

Eyes, Ears and Nose

1. Ask the Doctor: Ear Tubes
2. Ask the Doctor: Nasal Polyps
3. Ask the Doctor: Sleeping with Eyes Open
4. Blepharitis Common in CdLS
5. Ear Infections in Children With CdLS
6. CdLS and the Eye by Drs. Ronald Berger, Susan Schloff, and Christianne Schoedel, CdLS Foundation Clinical Advisory Board Members. (May 2005)
7. Eye Care - The Families’ Perspective by Lynn P. Audette, M.S.W., Family Service Coordinator. (May 2005)
8. Ear, Nose and Throat Health in CdLS
9. CVI (Cortical/Cerebral Visual Impairment)--What You Should Know

Top

Family and Emotional Issues

1. Grieving: Like it or Not, It Serves a Real Purpose
2. Grieving: Guilt Can Motivate Change
3. Grieving: How to be a Survivor
4. Grieving: Take Time to Grieve
5. Raising a Child with a Disability: Welcome to Holland
6. The Impact of Childhood Disability: The Parent's Struggle
7. Public Scrutiny: As Different As Snowflakes
8. Dealing With Depression (html), PDF version
9. How to Develop a Child's Best Advocate By Darrell Cookman. Condensed from a workshop presented at the CdLS-USA Foundation's 21st International Conference by keynote speaker, Patty McGill Smith. (August 2001)
10. Taking Care of Me by Eileen P. Ahearn, M.D., Ph.D. (December 2000)
11. Parents, A Crucial Resource by By Antonie D. Kline, M.D. (.doc) (October 2004)
12. Looking Ahead, Beginning Today By Janette Peracchio, M.S., Family Service Coordinator (November 2005)
13. Stories From The Homefront: Discussions On Living Arrangement Choices By By Natalie Scacco, M.S.W., Family Service Coordinator (January 2006)

Top

Feeding & Gastroesophageal

1. Common Feeding Issues and Forming A Treatment Plan
2. Gastroesophageal Reflux: An abridged presentation by Carol Potter, M.D.
3. Reflux - Managing a Common Concern
4. GI Distress - Diverse Manifestations
5. GI Distress - Malrotation, Volvulus, Bowel Obstruction, Pancreatitis
6. One Family's Perspective by Mindy C. Webb, L.C.S.W. (October 2000)
7. Common Food Allergies: Altering Diet for Improved Quality of Life by Judy Anderson, B.A., Lynn P. Audette, M.S.W., and Bruce Cleinman, M.A., Family Service Coordinators (.doc) (January 2005)
8. Eating Well With CdLS by Joni Rampolla, R.D., L.D., (.doc) (January 2005)
   Daily Caloric Requirements Chart

Top

Genetics and Diagnosis

1. Genetic Variation Within the Syndrome
2. Identification of the Cornelia de Lange Syndrome Gene
3. A Journey, Not a Destination (.pdf) by Laird Jackson, M.D. (.doc) (June 2004)
4. Recurrence Rates for CdLS

Top

Growth

1. Chart of Height in Females with de Lange Syndrome Compared to Normal Females
2. Chart of Height in Males with de Lange Syndrome Compared to Normal Males
3. Growth Manifestations in the Brachmann-de Lange Syndrome
4. Slow and Steady Road To Weight Gain

Top

Neurology

1. Defining and Demystifying Seizure Disorders by Dr. Edward M. Kaye. (April 2000)
2. Seizures: One Family's Experience by Lynn P. Audette, MSW. (April 2000)
3. Investigating Pain, Touch, and Temperature Sensations: Is a Small Fiber Sensory and Autonomic Neuropathy Part of th Syndrome? by Carsten G. Bönnemann, M.D. (.doc) (October 2004)

Top

Orthopedics

1. When to See An Orthopaedic Surgeon
2. CdLS, Walking and Orthopedic Issues by Thomas Renshaw, M.D. (February 2002)

Top

Speech and Language

1. Communication Intervention in Cornelia de Lange Syndrome
2. Experts Speak Out on Facilitating Communication
3. Speech & Language: Try and Try Again to Help Child Develop Speech
4. Communication Development and Characteristics by Marjorie Goodban, Ph.D., CCC-SLP (August 2000)

Top

Therapies

1. More Than Just Friends (June 2003)
2. Music Therapy: Therapy that is Music for the Mind and Soul
3. Music Therapy: What to Listen for when Selecting a Music Therapist
4. CdLS and Physical Therapy
5. Occupational Therapy and CdLS

Top

Packets of Information (Available through the CdLS-USA Foundation office)

1. Toilet Training
   
   

   Top

   
   
   

   Adobe Acrobat Reader is free, and freely distributable, software that lets you view and print Portable Document Format (PDF) files.