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For people with Down syndrome, family members, caregivers and professionals.

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Catatonia in Down Syndrome: Systematic Approach to Diagnosis, Treatment and Outcome Assessment Based on a Case Series of Seven Patients

Author: Miles, Takahashi, Muckerman, Nowell, Ithman - Neuropsychiatric Disease and Treatment - 2019

Abstract Objective:  The goal is to expand our knowledge of catatonia occurring in adolescents and young adults with Down syndrome (DS) by describing the first prospective, consecutive, well-

Health Care Resources for Adults with Down Syndrome

Author: Down Syndrome Medical Interest Group - DSMIG

The DSMIG Health Care Resources for Adults with Down Syndrome page linked below contains practice guidelines, reviews, and research articles on adult health, health utilization, morbidity, and mortali

Tips for Going Up and Down Stairs Safely

Author: Katie Frank, PhD, OTR/L - Occupational Therapist, Adult Down Syndrome Center

Going up and down stairs can be challenging for some people with Down syndrome. Aging, differences in depth perception, unsteady gait, and other issues may contribute to difficulty with navigating sta

Tips for Communicating with a Patient with Intellectual Disabilities

Author: Center for Inclusive Health - Special Olympics

The resource linked below shares tips for communicating with patients with intellectual disabilities. As the tips indicate, the most important thing to remember is to communicate with the patient firs

Decline in Skills - Webinar (2019)

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

ARCHIVED:  This resource has been archived and will no longer be updated. Please see the Decline in Skills and Regression section of our Resource Library for updated resources.  The

A Center for Adults and Adolescents with Down Syndrome

Author: Chicoine, McGuire, Dominiak, Bilodeau, & Chicoine

An article written to celebrate the 20th anniversary of the opening of the Adult Down Syndrome Center of Advocate Lutheran General Hospital and Advocate Medical Group

Development of a Clinic for Adults With Down Syndrome

Author: Chicoine, McGuire, Hebein, Gilly

This is an article published in the journal Mental Retardation in 1994.

Looking Ahead: Down Syndrome Research Now and in the Future

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

The video below is a recording of a presentation from the Adult Down Syndrome Center's Healthy Me, Healthy You, Healthy Us Conference held on April 6, 2019. The presenter is Brian Chicoine, MD

Regression in Adolescents and Adults with Down Syndrome

Author: Chicoine & Capone - Chapter in Physical Health of Adults with Intellectual and Developmental Disabilities

Abstract: There has been a growing number of clinical case reports of regression in adolescents and adults with Down syndrome who have shown unexpected and severe regression in cognitive and adaptive

Chronic Cough in Adults with Down Syndrome

Author: Ravi Shah, MD - Family Medicine Resident, Advocate Lutheran General Hospital

Definition: Chronic cough is defined as any cough that lasts greater than three weeks. It is a common condition in adults with Down syndrome. Reasons that chronic cough have a higher frequency in peop

Family Care Toolkit

Author: National Down Syndrome Congress - Resource

The Family Care Toolkit linked below is a resource created by the National Down Syndrome Congress with the support of the Global Down Syndrome Foundation. It helps families and primary caregivers gath

How I Learn

Author: GiGi's Playhouse - Video and Handout

The link below goes to a resource from Gigi's Playhouse called "How I Learn." It includes a video and handout that share information about how individuals with Down syndrome

The Role of Polypharmacy - General Aging in Intellectual and Developmental Disabilities

Author: Julie A. Moran, DO - Geriatrician, Aging and Intellectual/Developmental Disabilities Specialist

The webinar recording below was shared by the Center for Developmental Disabilities Evaluation and Research (CDDER) and the Massachusetts Department of Developmental Services (DDS). The presentation s

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome

Author: de Knegt et al. - Pain Medicine (2017)

Abstract: Objective: The aim was to examine whether the presence of pain (based on physical conditions and participants’ report) and self-reported pain experience in adults with Down syndrom

Attending a Summer Camp

Author: Shane Sexton, LCSW - Social Worker, Adult Down Syndrome Center

It may be hard to believe when many of us are still shivering in our winter coats, but summer is just around the corner! Summer is not only a time to soak up sunshine and enjoy family vacations but a

Reduced Pain Responses in Individuals with Down Syndrome

Author: Lisa Dahl, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Individuals with Down syndrome have reduced and delayed pain responses. They are not insensitive to pain, but their expression is delayed and less precise. It is hard to tell if there is a decreased a

Estimation of the Number of People with Down Syndrome in the United States

Author: de Graaf, Buckley, & Skotko - Genetics in Medicine (2016)

Abstract: Purpose:  An accurate accounting of persons with Down syndrome (DS) has remained elusive because no population-based registries exist in the United States. The purpose of this study

Morbidity and Medication in a Large Population of Individuals with Down Syndrome Compared to the General Population

Author: Alexander, Petri, Ding, Wandel, Khwaja, & Foskett - Developmental Medicine and Child Neurology (2015)

Abstract Aim: The aim of this study was to describe the incidence of morbidities and the prevalence of medical prescriptions in a large Down syndrome population. Me

Catatonia in Down Syndrome: A Treatable Cause of Regression

Author: Ghaziuddin, Nassiri, & Miles (2015) - Neuropsychiatric Disease and Treatment

Abstract Objective:  The main aim of this case series report is to alert physicians to the occurrence of catatonia in Down syndrome (DS). A second aim is to stimulate the study of regression

Supporting a Happy, Healthy Adolescence for Young People with Down Syndrome and Other Intellectual Disabilities: Recommendations for Clinicians

Author: Baumer & Davidson - Current Opinion in Pediatrics (2014)

Abstract Purpose of Review:  To review clinical updates and current healthcare issues for adolescents with Down syndrome and intellectual disabilities, including behavioral, social, and emoti

Definition of Health

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity. (World Health Organization) At the Adult Down Syndrome Center, we strive to ad

Health Watch Table - Down Syndrome

Author: Developmental Disabilities Health Care Toolkit Advisory Committee - Toolkit for Primary Care Providers

The health watch table linked below contains recommendations for a number of areas of health for people with Down syndrome including otolaryngology, dental, cardiovascular, sleep, respiratory, gastroi

Fatigue

Author: Brian Chicoine, MD - Medical Director, Adult Down Syndrome Center

I recently had a couple inquiries about people with Down syndrome in their 50s or 60s who developed increased fatigue and falling asleep easily (these were new symptoms). Questions asked included: Is

The Guide to Good Health for Teens & Adults with Down Syndrome

Author: Brian Chicoine, MD & Dennis McGuire, PhD - Book (2010)

Publisher's Book Description: The authors of the bestselling  Mental Wellness in Adults with Down Syndrome  turn their attention to the physical health of teens and adults wi

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Please note: The information on this site is for educational purposes only and is not intended to serve as a substitute for a medical, psychiatric, mental health, or behavioral evaluation, diagnosis, or treatment plan by a qualified professional. We recommend you review the educational material with your health providers regarding the specifics of your health care needs.

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