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

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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

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

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

An Introduction to Benefits: Federal and State Programs Available in Illinois

Author: Suzanne Aaron, Information & Outreach Specialist - The Arc of Illinois, Illinois Life Span Program

In January 2022, Suzanne Aaron, an information & outreach specialist from the Illinois Life Span Program of the Arc of Illinois, presented a webinar called "An Introduction t

Regression in Persons with Down Syndrome

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

In October 2021, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for families called "Regression in Persons with Down Syndrome." The res

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.

An Introduction to Developmental Disability Resources, Organizations, and Terms - Webinar Slides

Author: The Arc of Illinois - Presentation

In May 2021, the Arc of Illinois hosted a webinar called, "An Introduction to Developmental Disability Resources, Organizations, and Terms." It was a webinar for family members and c

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

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

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

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

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

Steps to Accessing Adult Services and Supports

Author: Grace O’Connor and Ann Garcia - Patient Advocates, Adult Down Syndrome Center

While special education services are an entitlement, adult services are based on eligibility and availability of funding. If you are eligible and funding is available, services can be accessed. In the

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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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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