|
MedicalPSYCHOMOTOR DEVELOPMENT IN CdLS CHILDREN - Birth to 12 yearsGROWTH CHARTS - FEMALES GROWTH CHARTS - MALESHead Circumference Head Circumference Height - Birth-36 months Height - Birth-36 months Height - 2-18 years Height - 2-18 years Weight - Birth-36 months Weight - Birth-36 months Weight - 2-18 years Weight - 2-18 years MEDICAL/PROFESSIONAL ON LINE - TREATMENT PROTOCOLSWhether, you are seeking assurance that your child is developing normally or you need guidance on how to deal with a particular problem, simply CLICK HERE to view the online library of SAC information to common medical problems associated with CdLS. BEHAVIOURAL CHALLENGES IN CHILDREN AND ADULTS WITH CdLSPrevious research into the behavioural characteristics of the syndrome has largely focused on the prevalence and nature of self-injurious behaviour in CdLS and possible underlying causes. More recently, research has widened and has begun to consider other behavioural characteristics of the syndrome. Read Dr Oliver’s full report HERE. SELF INJURIOUS BEHAVIOUR IN CORNELIA DE LANGE SYNDROMEProf. Chris Oliver, together with a number of his colleagues at University of Birmingham have written a book for parents and carers to help towards an understanding of self-injurious behaviour when it is shown by a child or adult with Cornelia de Lange Syndrome. By writing this book they hope that parents and carers will become informed about the causes of self-injurious behaviour and active contributors to the assessment and treatment process. Download your copy of this guide for parents and carers HERE. THE CORNELIA DE LANGE SYNDROME GENE EXPLAINEDTwo articles describing the discovery of a gene on chromosome 5 were published in the June 2004 edition of the medical journal, Nature Genetics. Most people without a genetic science background would have difficulty understanding the articles. Dr Meredith Wilson, Professional Director and National SAC Representative, has provided a summary which will explain a little of what the research terms have shown and how they did this. Please read Dr Wilson's full report HERE. ANOTHER GENE FOR CdLS DISCOVERED BY ITALIAN RESEARCHERSDr Meredith Wilson, Clinical Geneticist and Australian Representative, International CdLS Specialist Advisory Council gives details of this new discovery and what it means to families. Dr Wilson's full report HERE. USA RESEARCHERS DISCOVER A 3RD GENE ASSOCIATED WITH CdLSThe CdLS research team at the Children’s Hospital of Philadelphia (CHoP) recently discovered a third gene involved in CdLS. The information was published in an article in the March 2007 edition of the American Journal of Human Genetics along with more information about the second CdLS gene. Dr Meredith Wilson, Clinical Geneticist and Australian Representative, International CdLS Specialist Advisory Council gives an overview HERE. WHAT CAN YOU DO TO IMPROVE THE HEALTH AND BEHAVIOUR OF YOUR CHILD?Dr Robyn Cosford MBBS (Hons) FACNEM gave an excellent session at the Sydney Conference in 2003. With her kind permission, an EXCERPT of her paper titled "Nutritional, Metabolic and Environmental Influences in Children's Health" is provided here for all CdLS parents.
GO TO TOP
|
|
|||||
