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

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Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   In January 2023, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for fam

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Decline in Skills and Regression in Adolescents and Adults with Down Syndrome Webinar Recording (8/31/2022)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD of the Adult Down Syndrome Center. Individuals with Down syndrome may experience decline in skills for many reasons

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Assessment and Diagnosis of Down Syndrome Regression Disorder: International Expert Consensus

Author: Santoro et al. (2022) - Frontiers in Neurology

Abstract Objective:  To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome. Background:  The

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Electroconvulsive Therapy, Catatonia, and Regression in People with Down Syndrome

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

Electroconvulsive therapy (ECT) is a treatment that involves sedating an individual with anesthesia and then inducing a seizure with a short electrical stimulation of the brain (more information can b

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Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. (2022) - Journal of Neurodevelopmental Disorders

Abstract Background:  Down syndrome regression disorder is a symptom cluster consisting of neuropsychiatric regression without cause. This study evaluated the incidence of neurodiagnostic abn

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Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Webinar Recording (5/18/2022)

Author: Brian Chicoine, MD - DSAW Webinar

On May 18, 2022, the Down Syndrome Association of Wisconsin hosted a webinar called "Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome," presented

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Prevalence of Infectious Diseases Among 6078 Individuals with Down Syndrome in the United States

Author: Fitzpatrick et al. - Journal of Patient-Centered Research and Reviews

Abstract A recent disease prevalence study of the largest documented Down syndrome (DS) cohort in the United States strongly suggested significant disparity in general infectious disease conditions am

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Aging and Life Expectancy

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

Today, people with Down syndrome (DS) are living longer and healthier than any other time in the past. In 1900 the life expectancy of people with DS was 9 years. By 1984, the life expectancy

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Possible Causes of Regression in People with Down Syndrome during the COVID-19 Pandemic

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

We received a question about a man with Down syndrome in his late 30s. His family shared that he developed catatonia, was hearing people speaking in his head, and lost a significant amount of weight.

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Mechanistic Analysis of Age-Related Clinical Manifestations in Down Syndrome

Author: Chen et al. - Frontiers in Aging Neuroscience (2021)

Abstract Down syndrome (DS) is the most common genetic cause of Alzheimer's disease (AD) due to trisomy for all or part of human chromosome 21 (Hsa21). It is also associated with other phenoty

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Regression in Down Syndrome Support Group

Author: Eileen Quinn, MD - Moderator

The link below takes you to a closed Facebook page for families, caregivers, and professionals who support individuals with Down syndrome who have experienced or are experiencing regression. If you cl

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Use of Prolia to Treat Osteoporosis

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

We were asked a question about the use of Prolia to treat osteoporosis in individuals with Down syndrome. Osteoporosis is a condition in which a person's bones become brittle or weak. It can l

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Aging and Alzheimer's Disease in Adults with Down Syndrome Webinar Recording (11/10/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on November 10, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Synd

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Mental Wellness and Aging in Adults with Down Syndrome Webinar Recording (10/27/2020)

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 "Mental Wellness and Aging in Adults with Down Syndrome." The webinar was hosted by the Do

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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

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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

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Living with Dementia

Author: Down's Syndrome Scotland

This booklet for families and caregivers of individuals with Down syndrome discusses dementia. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

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Let's Talk about Dementia

Author: Down's Syndrome Scotland

This booklet for individuals with Down syndrome explains dementia using easy-to-read language. It is provided by Down's Syndrome Scotland (www.dsscotland.org.uk/resources/publications/).

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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.  Me

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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 et al. - 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-

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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

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Today & Tomorrow: A Guide to Aging with Down Syndrome

Author: Canadian Down Syndrome Society - Resource

The resource linked below is a guidebook on aging from the Canadian Down Syndrome Society. While some of the information and recommendations are specific to Canada, the resource contains helpful infor

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Keeping Connected to Someone with Memory Loss

Author: All Trust Home Care

This two-page resource provides ideas for staying connected to someone who is experiencing memory loss.

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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 f

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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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