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

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Routines during the Pandemic

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

When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We h

Tips for Running Virtual Social Groups

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

Since April, staff at the Adult Down Syndrome Center have been hosting online socials and social skills groups via Zoom. Our goal is to encourage social participation and engagement while we maintain

Clinical Characteristics of Individuals with Down Syndrome Deceased with COVID-19 in Italy - A Case Series

Author: Villani et al. - American Journal of Medical Genetics Part A (2020)

Abstract Background:  Persons with Down syndrome (DS) are presumed to be at high risk of severe CoVID-19 due to immune dysregulation and often compromised cardiopulmonary function. Aim of the

Hospital Visitor Policies During the COVID-19 Pandemic

Author: Adult Down Syndrome Center - Resource List

UPDATED JUNE 2020 : On June 9, the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS) announced that it had reached a resolution on the first federal complaints re

Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

Down Syndrome Disintegrative Disorder: A Clinical Regression Syndrome of Increasing Importance

Author: Rosso et al. - Pediatrics (2020)

Abstract Down syndrome disintegrative disorder (DSDD), a developmental regression in children with Down syndrome (DS), is a clinical entity that is characterized by a loss of previously acquired adapt

Helping an Individual with Down Syndrome Tolerate COVID-19 Testing

Author: Adult Down Syndrome Center - Resource List

*Please note: this article discusses viral testing used to diagnose if an individual currently has COVID-19. This article does not discuss antibody testing used to determine if an individual was expos

Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (5/5/2020)

Author: Brian Chicoine, MD - NDSS Adult Summit

The link below takes you to a recording of a webinar by Brian Chicoine, MD, called "Decline in Skills and Regression in Adolescents and Adults with Down Syndrome." This webinar was p

Non-Discrimination in Medical Treatment for COVID-19

Author: Adult Down Syndrome Center - Resource List

Reports of potential discrimination in medical treatment for individuals with intellectual and developmental disabilities have caused fear, anxiety, and anger within the Down syndrome community. Depar

Refusal to Eat Solid Foods

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

We received a question about a person with Down syndrome who was refusing to eat solids. He was found to have dental disease. He needed several fillings and had a couple baby teeth removed. The dentis

Regression and Loss of Skills in Adolescents and Adults with Down Syndrome Presentation (2/17/2020)

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

The video below is a recording of Brian Chicoine, MD, medical director of the Adult Down Syndrome Center, presenting on "Regression and Loss of Skills in Adolescents and Adults with Down Synd

Unexplained Regression in Down Syndrome: 35 Cases from an International Down Syndrome Database

Author: Santoro et al. - Genetics in Medicine (2019)

Abstract: Purpose:  An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease.  M

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-

Decline in Skills - Webinar (2019)

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

The link below takes you to a recording of a webinar presented by Dr. Brian Chicoine called "Decline in Skills." People with Down syndrome may have a decline in skills for a variety

How to Achieve Healthy Weight Without Using the "D" Word

Author: Janet Bilodeau, CNP - 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 presenters are Janet Bilodeau,

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

Strength Training in Adults with Down Syndrome

Author: Maura Fitzpatrick-Kissick, DO - Family Medicine Resident, Advocate Lutheran General Hospital

Before starting an exercise program, we recommend discussing it with your health care provider. Strength is one part of fitness that helps keep you healthy and strong. Strength can h

Exercise in People with Down Syndrome

Author: Kyle Yost, DO - Family Medicine Resident, Advocate Lutheran General Hospital

In the United States, obesity is on the rise. This is also true for individuals with Down syndrome. Individuals with Down syndrome are at a higher risk of becoming obese compared to the general popula

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

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