Missing Genetic Pieces stragties for living with vcfs

Missing Genetic Pieces: Strategies for Living with VCFS, the Chromosome 22q11 Deletion By Sherry Baker Gomez

 

By Sherry Baker Gomez

 

Cover Design and Illustrations

 by Kas Winters

 

Foreword by

Dr. Robert J. Shprintzen

A book based off of Sherry Baker Gomez account of her life with her son with 22q

• A History of VCFS

• A Description of VCFS, List of 187+ Anomalies associated with 22q11 Deletion

• A list of Medical Specialists

Systems Affected: Heart, Pulmonary and Respiratory, Kidneys, Anal Anomalies, Ears, Eyes, Facial Features, Hormone Difficulties, Immune System, Dental, and Palate

Feeding and Pain Issues

Development: Developmental Issues and Stages, Newborn Conditions, Potty Training, Psychophysiology, Biofeedback, Emotional Development and Social Skills

Education: Accessing services, Individual Education Plans (IEP), Non-Verbal Learning Disorder (NVLD), Grade School Ages, I.Q. Tests scores and Neuropsychology

Speech: Speech and VCFS, Teaching Babies Sign Language, Central Auditory Processing, Fisher's Auditory List

Behavioral Problems: Behavior list and Puberty

ADHD

Psychological Issues: Bipolar and Schizophrenia

The COMT Gene: Pain and OCD (Obsessive Compulsive Disorder)

Negotiations

Advocacy

Housing and Group Homes

Finances and Trusts

Support Systems for Families

Stories from Families Living with VCFS

Marriage, Relationships and VCFS

Parent to Parent Talk

Parents Speak Out: Tips from Families with VCFS Children

List of Medications

Medical Dictionary

My Review:I am a adult living with 22q11.2 deletion syndrome I am also a parent to a child with 22q11.2 deletion syndrome. I have a father and three siblings with 22q as well. I have to say that I found the book to be my go to suggestion for new parents of 22q to read. there isn't much on adults with the disorder but reading about another mothers struggles helped me feel like I was not the only one who had struggles in raising a child with 22q. I mentor parents and highly recommend this book because it provided incites into what moms experience and offers resources and helpful tips on how to cope with a new disgonses. I suggest this book to the parents I mentor

Where to buy:

https://www.amazon.com/Missing-Genetic-Pieces-Sherry-Baker-Gomez/dp/097453580X

 

 

 

Velo-Cardio-Facial Syndrome, Volume I (Genetic Syndromes and Communication Disorders)

This Book has really helped me to understand the Medical terms and other stuff the doctor talk about.

Buy this book Velo-Cardio-Facial Syndrome, Volume I

With an estimated human population prevalence of 1:2000, Velo-Cardio-Facial Syndrome (VCFS) is the second-most common multiple anomaly syndrome in humans and almost all children with the syndrome have speech and language impairments that are generally recognized to be complex and difficult to treat. However, the authors of this new book contend that treatment techniques are not at all complex and perceived problem arise from a basic lack of understanding, and lack of education in graduate courses. To demonstrate and to provide clinicians with expert guidance, they have produced here a comprehensive combination of text and video demonstrating the clinical features of Velo-Cardio-Facial Syndrome (VCFS); the communication phenotype in VCFS; the natural history of speech and language in VCFS; diagnostic procedures necessary for assessing speech and language disorders in VCFS; the treatment of speech and language impairment in VCFS; and outcomes, demonstrated by video on an accompanying DVD.

 

Velo-Cardio-Facial Syndrome Volume 2: Treatment of Communication Disorders (Genetic Syndromes and Communication Disorders)

This Book has really helped me to understand the Medical terms and other stuff the doctor talk about.

Buy this book  Velo-Cardio-Facial Syndrome Volume 2

With an estimated human population prevalence of 1:2000, Velo-Cardio-Facial Syndrome (VCFS) is the second-most common multiple anomaly syndrome in humans and almost all children with the syndrome have speech and language impairments that are generally recognized to be complex and difficult to treat.
To demonstrate and to provide clinicians with expert guidance, the authors have produced a comprehensive two-volume set with a combination of text and video demonstrating the clinical features of Velo-Cardio-Facial Syndrome (VCFS); the communication phenotype in VCFS; the natural history of speech and language in VCFS; diagnostic procedures necessary for assessing speech and language disorders in VCFS; the treatment of speech and language impairment in VCFS; and outcomes, demonstrated by video on an accompanying CD-ROM to Volume II.
Volume II of this set opens with information of aspects of speech and language and the difficulties most often associated with VCFS. Authors also consider how these difficulties interact with each other. Chapter two describes the aspects of articulation and resonance, how they are best evaluated, and on surgical management. In Chapter three, general principles are outlined on how to make articulation therapy successful for children with cleft palate, VCFS, or both, many of which apply to language therapy and other behaviors, as well. The last chapter offers insights into prevention of the abnormal articulation patterns that tend to develop and how to guide children through stages of language development.
The DVD includes all images from the book, along with 80 video clips that present normal and abnormal conditions and illustrate anomalies in VCFS through nasopharyngoscopy and videofluoroscopy examples

 

Educating Children with Velo-Cardio-Facial Syndrome (Also Known as 22q11.2 Deletion Syndrome and DiGeorge Syndrome) (Genetic Syndromes and Communication Disorders)

This is a book which I have found to be very helpful. Working with the teachers at my daughter school and in my personal life.

Buy the Book Educating Children with Velo-Cardio-Facial Syndrome (Also Known as 22q11.2 Deletion Syndrome and DiGeorge Syndrome)

Velo-cardio-facial-syndrome, also known as 22q11.2 deletion syndrome and DiGeorge syndrome, is relatively new the genetic test to determine if a child has it has only been available since 1994. Educating Children with Velo-Cardio Facial Syndrome (also Known as 22q11.2 Deletion Syndrome and DiGeorge Syndrome), Second Edition, effectively blends the thoughtful research that has transpired within the past 15 years with practical and current educational strategies to better meet the needs of children with VCFS and other developmental disabilities.
To first address the scientific information that is needed to understand the syndrome and the implications of current research, expert contributors present the results of studies involving brain abnormalities, language/learning profiles and psychiatric/behavioral difficulties. These valuable chapters are written in a reader-friendly manner to help parents, professionals, and teachers gain useful and necessary comprehension of the unique characteristics of the VCFS population.
The second part of the book is a practical guide to educating a child with VCFS from birth through adulthood. Divided into the various stages of development from preschool to adulthood, it includes information regarding the necessary tests special education teams should run, typical difficulties associated with learning, changes that occur with ability as the child matures (drop in IQ scores and increased learning challenges), as well as behavioral problems in the school setting. Each section includes discussions of the learning challenges and accommodations that can be used at school and at home during that stage of maturity. The authors also present meaningful advice on issues such as friendships, private vs. public school placement, job training, and other pertinent decisions that affect the VCFS child's everyday life.
For the second edition, the author has added fresh and updated content. A partial list of new material includes:
  • The most recent research and studies to make the text as up-to-date as possible
  • Expanded and enhanced coverage of bullying and the social/emotional aspects of VCFS
  • More information on common core standards and standardized testing for children with disabilities
  • Homeschooling and other placement alternatives
  • Executive functioning deficits and their impact in the classroom
  • Dealing with problem behaviors
  • Issues related to anxiety and school success
  • Cognitive remediation and new treatment strategies
  • New math and reading remediation techniques
  • Expanded section on the very young child
With its expanded content, as well as contributions from some of the most highly regarded experts in the field, Educating Children with Velo-Cardio Facial Syndrome (also Known as 22q11.2 Deletion Syndrome and DiGeorge Syndrome), Second Edition is an essential resource for teachers, parents, physicians, and therapists of children with velo-cardio-facial-syndrome.