Health and medical issues

There are many websites which offer information relating to medical issues associated with Down syndrome. The following is a list of sites which are recommended as good starting points for families. These sites offer good current factual information on a range of health and medical topics. 

Down Syndrome health issues
Health site authored by US paediatrician Dr Len Leshin, father of a child with Down syndrome. The site is aimed at parents and offers a comprehensive range of material on common health and wellbeing issues. The author also submits regular summaries of current research articles. Recommended as first point of reference for families on medical matters. 

Down’s Syndrome Association (UK)
Publishes a range of comprehensive information booklets on different health issues. 

Learning about Intellectual Disabilities and Health
This site, developed by St. George's Hospital Medical School in London and the UK Down Syndrome Association, is intended for health professionals but much of the information about specific conditions would also be helpful for parents. 

Riverbend Down Syndrome Support Group
The ‘Medical series’ has information, including research abstracts, on a wide range of medical issues. 

National Down Syndrome Society (US) 
Site includes information and further reading lists on a number of common medical issues. The site also includes comprehensive health care guidelines for all age groups and growth charts for children with Down syndrome (also available at www.growthcharts.com). 

The Adult and Teen Down Syndrome Center
Publications area of the Adult and Teen Down Syndrome Center (Illinois, US). Particularly useful for health issues relating to adults with Down syndrome (the Center’s directors are the authors of Mental wellness in adults with Down syndrome, referenced below). 

Down Syndrome Scotland - Basic Medical Surveillance Essentials

Research and trials links:

Recommended reading

*Publications marked with this symbol are available for DSV members to borrow from the DSV Resource Library.

*Selikowitz, Mark (2008)
Down syndrome.The facts
 Oxford (3rd ed, first publ 1990) 
Gives a good general overview of the medical issues which are most commonly associated with Down syndrome. 

*Van Dyke, DC et al(eds) (1995)
Medical and surgical care for children with Down syndrome. A guide for parents
 Topics in Down Syndrome series, Woodbine House 
Detailed reference guide which includes many of the commonly occurring medical issues. 

*McGuire, Dennis and Brian Chicoine (2006)
Mental wellness in adults with Down syndrome. A guide to emotional and behavioural strengths and challenges
 (Woodbine House) 
Comprehensive handbook which addresses health in adults with Down syndrome. Focus is on mental wellness but this book also provides information and assessment guidelines related to physical health considerations. Recommended reading for all families of adults with Down syndrome. 

*Brian Chicoine and Dennis McGuire (2010)
The guide to good health for teens and adults with Down syndrome (Woodbine House)
"Chicoine and McGuire explain the issues that affect health care of people with Down syndrome. They discuss how to promote good health in teens and adults, what doctor visits can achieve, what health problems occur more or less frequently in people with Down syndrome, how health concerns present differently and the interaction between physical and mental health. They use many case studies throughout the book to illustrate how problems may present...A book like this has long been needed. The format is easy to use. The case studies, photos and sidebars all add to understanding. It complements Mental Wellness (see above) very well. There is some overlap between the two, but The Guide to Good Health focuses largely on medical issues and Mental Wellness focuses on behavioural issues". review by Kathi Beck, Voice December 2010

Health care guidelines for people with Down syndrome 

Royal Children's Hospital - Screening for Children with Down syndrome

The three sources below list internationally recognised health care screening and health supervision guidelines for people with Down syndrome of all ages. 

Cohen, William I (1999) 
Health Care Guidelines for Individuals with Down syndrome: 1999 revision
 Down Syndrome Quarterly vol 4/3 pp1-16 
[original document published in Down Syndrome Quarterly at http://www.dsrf.org

Cohen, William I
Down Syndrome Health Care guidelines 
(based on 1999 Down Syndrome Health Care Guidelines) 

Marilyn J Bull and the Committee on Genetics (2011)
Clinical report - Health supervision for children with Down syndrome Pediatrics 128/2 pp393-406

Hard copies of all these documents can be obtained from the office of Down Syndrome Victoria by calling 1300 658 873 or email info@dsav.asn.au

 

Growth charts

Growth charts (height, weight and head circumference) specific to infants and children with Down syndrome can be downloaded at: www.growthcharts.com
The charts on this site have been reproduced internationally and are widely used. Hard copies can be obtained from the office of Down Syndrome Victoria by calling 1300 658 873 or email info@dsav.asn.au

Annual health checks

Your GP can do a FREE health check for individuals with Down syndrome every year - find out more here.

Personal health records 

CDDS Personal Health Record 
The Canadian Down Syndrome Society produces a comprehensive medical history and health record intended for older teenagers and adults. This can be used to record existing personal health information and as an ongoing record of medical appointments, medications and other important medical history. 

Personal health record templates can also be found at: 
Centre for Developmental Disability Health Victoria
Personal health records for people with a developmental disability

Down Syndrome Association of NSW
Personal health record for adults with Down syndrome

Down’s Syndrome Association, UK 
Health. Looking after yourself
This publication, written by and for adults with Down syndrome, covers a whole range of health matters in plain language and with reproducible revision activities. It includes a reproducible section for adults to record information which may be useful when visiting a health professional.