"*Chicoine and McGuire founded Chicago's Adult Down Syndrome Clinic in 1992 to meet the health needs of adolescent and adult Down Syndrome (DS) people. While care for DS children can be very good, quality appears to drop as they age and move out of pediatric practices. This excellent book provides a wealth of information for DS caregivers, including how to find a physician who will provide a comprehensive medical home. Health problems may be difficult to diagnose and treat because of communication and mental challenges; guidelines for teaching health-promoting behaviors and correctly 'reading' health distress signals are clear and well written. Diagnosis, treatment, and prevention of common health conditions impacting DS people are described. Mental and emotional issues that can affect physical health are covered. Sexuality and birth control are discussed, as is abuse prevention. Information on residential option as well as end of life issues is provided.
VERDICT This is an extremely informational volume that should have a place in all consumer health libraries serving patrons with DS."
-Library Journal (*starred review), September 2010
"[A] must-have for parents and caretakers of adolescents and adults with Down syndrome. In twenty-three exhaustive chapters on everything from thyroid problems to cancer to sleep issues, the authors explain in plain English the common medical problems the Down syndrome population can experience."
-Mile High Down Syndrome Association's Down's Update, January/February 2011
"The Guide to Good Health for Teens and Adults with Down Syndrome will be valuable for family members of teens and adults with Down syndrome."
-Canadian Journal of Occupational Therapy, October 2012
"Chicoine and McGuire are directors of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, IL. Since the Center opened in 1992, the two have seen more than 4,000 patients, aged 12 to 80+ . In 2006, they published the popular Mental Wellness in Adults with Down syndrome: A Guide to Emotional and Behavioral Strengths and Challenges. They believe (and frequently make the case) that there is a strong link between mental and physical health for their patients.
Their second book provides excellent information on both maintaining good physical health and providing appropriate care to diagnose and treat health problems.
I think my favorite line in this book comes from the section on treating sleep apnea with a CPAP continuous positive airway pressure) machine. As many parents can attest, getting accurate information is one challenge; getting your child – no matter what age – to comply with the prescribed treatment is another. Drs. Chicoine and McGuire know that, so they offer a number of suggestions to encourage the use of the mask, including 'Watch the movie Top Gun in which Tom Cruise is a fighter pilot who (of course) wears a mask while flying. (If it is good for Tom Cruise, it is good for me.)' That's the kind of wisdom that only comes from experience!
This book is written for parents, caregivers and medical professionals who see people with DS in their practices. All will be able to put it to good use in their care.
-Down Syndrome News, Volume 34, #1
"This is an excellent addition to the array of medical reference books available to caregivers of people with Down syndrome. Its focus on the care of adolescents and adults is unique. This is important today, and in the future, as patients with Down syndrome continue to have longer life expectancies."
-Doody Book Reviews
"This is the book to keep on hand for adulthood--both to review health and preventative needs and when facing health concerns. I found it to be informative and accurate and accessible."
-Terri Abrams, Barries, Bridges, and Books blog
Read the entire review here
"Back in 1900, people born with Down syndrome (DS) had a life expectancy of nine years. Those born today have a life expectancy of fifty-six years. This increased longevity means that doctors, families, and individuals need new, updated information about age-related illnesses and how to maintain a fit, healthy lifestyle. Drawing on a combined sixty years of practical experience, doctors Brian Chicoine and Dennis McGuire offer exactly that in their second book about living with Down syndrome.
DS patients are more susceptible to some health issues—sleep apnea, obesity, gum disease—and less
susceptible to others—asthma, most types of cancers—but the underlying premise of The Guide to Good Health for Teens and Adults with Down Syndrome is that wellness should be a primary goal throughout a person's life. The authors, who have treated over 4,000 patients at the Adult Down Syndrome Center of Advocate Lutheran General Hospital, in Illinois, emphasize the need for good daily health habits, stressing that doctors and support people may need to find creative ways of listening to people with Down syndrome to get the whole story about their health.
With the introductory chapters addressing general elements of wellness such as medical screening,
nutrition, and social health, the bulk of the book consists of chapters that focus on specific aspects of health, like thyroid disorders and gastrointestinal and liver concerns. Every chapter contains interesting case studies along with resources that offer further information.
Chicoine and McGuire are both practical in their advice and sensitive to circumstantial challenges.
They point out that mental wellness is as important, and certainly linked to, physical health, and take care to explain that symptoms may present differently in patients with DS. Their language is never pedantic or condescending; other doctors, family members, and patients themselves will find their book
useful and often fascinating.
The authors readily admit that their experience with DS is limited: 'We will never completely know
what it is like to be a person with Down syndrome. However, we repeatedly find that if we try to understand out patients' perspective, it improves our care.' With this standard at the forefront of their approach to their patients, they are able to offer help beyond simple medical advice by improving the lives of both patients and the people who love them."
"Written by a physician who is medical director of the Adult Down Syndrome Center in suburban Chicago and the director of the Center’s Psychosocial Services, the pair brings over 30 years of practical experience to the pages of this book. Included are actual photographs of individuals that receive care at the center. This book is a companion to their first book entitled Mental Wellness in Adults with Down Syndrome. (Woodbine Press, 2006) The authors note that those with Down Syndrome are living longer and more productive lives, and the book is geared toward both caregivers and caretakers to assist them to identify the concerns that may arise in the lives of those with Down Syndrome.
Divided into a chapter format, the topics covered include the understanding of common issues that may affect health, how to promote health in both the community and at home, and the interaction between physical and mental health concerns. Specific emphasis is given to issues related to the skin, dental concerns, visual issues, heart and lung, and gastrointestinal concerns. Of special note is the chapter on emerging sexuality and abuse prevention as well as special concerns when the Down’s syndrome adult leaves home and plans ahead for independent living. Addenda include health screening recommendations and the importance of fluid intake. Resources include listings of self- help and professional groups including web addresses and toll-free numbers that can assist with specific problems. This book is highly recommended for practitioners and family members/caregivers of those with Down Syndrome."
-CAPHIS Consumer Connections
"Chicoine and McGuire have more experience caring for the physical and mental health of teens and adults with Down syndrome than anyone. Their experience has produced The Guide to Good Health for Teens & Adults with Down Syndrome which is filled with thoughtful, practical advice and written in a straight forward style making their recommendations accessible for families and healthcare professionals. They have simplified the complex and interrelated physical and mental health issues found in Down syndrome and produced an incredible guide."
-Nancy J. Roizen, M.D.
Director, Division of Developmental-Behavioral Pediatrics, Rainbow Babies and
Children’s Hospital, Cincinnati, Ohio
"It’s really important to be healthy for a long and adventurous life. This book highlights the specifics around staying healthy for people with Down syndrome, both the common ones and the more unusual issues. It is written in plain-language, and is intended for caregivers and families to learn how to promote healthy life styles. It is specifically for teens and adults, because the authors noticed that the quality of healthcare dropped for older patients, and often health concerns were blamed on 'the Down syndrome.' The book addresses issues such as Skin and Nail problems, Cardiac concerns, Coughs and Asthma, Mental Health, Sexuality, and Alzheimer's disease plus much more."
-New Zealand Down Syndrome Journal, Volume 56/ Autumn 2013
"Ever since the opening of the Adult Down Syndrome Center in Park Ridge, Illinois, I have had the pleasure and privilege, both as a team member and parent, of observing firsthand the wonderfully tender care teens and adults with Down syndrome receive there. For those who haven’t had such an opportunity, but have all the same questions I had as a parent, this book is the next best thing to a visit. It is filled with practical advice that will be helpful to family members and professionals. Drs. Chicoine and McGuire share the insights they have gained from their many years of practice and focus not only on health problems, but also on strategies that will help teens and adults live healthy, satisfying lives."
Executive Director (1979-2009), National Association for Down Syndrome
"Drs. Chicoine and McGuire have created a must-read book for families and health care providers who care for adults with Down syndrome. This accessible and encyclopedic work will always be on my shelf. An essential guide to caring for adults with Down syndrome, it covers the latest of the medical literature as well as indispensable pearls from their 18 years of clinical experience."
-Peter Bulova, M.D.
Medical Director of the University of Pittsburgh Adult Down Syndrome Center
"With Down Syndrome, it takes a different approach to maintain a healthy life. The Guide to Good Health For Teens & Adults with Down Syndrome is a discussion of Down syndrome, the problems that can occur in individuals with the disorder later in life, and the special care needed to counter and prevent them from becoming serious issues. With much thought on the connection of spiritual and mental health, issues regarding the end of life, and specific conditions discussed, The Guide to Good Health is a fine volume for one who is caring for another with Down Syndrome."
-Midwest Book Review, November 2010