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

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Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

UPDATED 9/9/2022 The physicians of the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follow the recommendations of

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

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

Pneumococcal Vaccines

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

April 2022: We updated this resource to include information about Prevnar 20 (pneumococcal conjugate vaccine, PCV20). What is pneumococcal disease?  Pneumococcal disease is caused by

Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Autism Speaks and DSMIG-USA DS-ASD Workgroup - Website

It is estimated that about 16-18% of people with Down syndrome also have autism spectrum disorder (ASD). The Down Syndrome Medical Interest Group-USA DS-ASD Workgroup collaborated with Autism Speaks t

Immune Response to COVID-19 Vaccines

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

We have shared both our clinical experience and studies that demonstrate clinical effectiveness and safety of COVID-19 vaccines in people with Down syndrome. However, until recently, studies have not

Safety and Long-Term Immunogenicity of BNT162b2 Vaccine in Individuals with Down Syndrome

Author: Valentini et al. - Journal of Clinical Medicine (2022)

Abstract We aimed to evaluate the safety and immunogenicity of the BNT162b2 vaccine in young people with Down syndrome (DS), and to compare their humoral immune response with those of the healthy cont

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

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.

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

Taking Medication for Side Effects from the COVID-19 Vaccine

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

As with all vaccines, there is the potential to experience side effects after getting the COVID-19 vaccine. This is true for people with and without Down syndrome. These side effects may include pain

Co-Occurring Down Syndrome and Autism Spectrum Disorder (DS-ASD)

Author: Down Syndrome-Autism Connection - Website

  Learn about co-occurring Down syndrome and Autism Spectrum Disorder (DS-ASD) on the page linked here . The information is provided by the Down Syndrome-Autism Connection, an organization wh

Flu Vaccine Information for People with Down Syndrome

Author: Daniela Estrada Gomez, MD - Down Syndrome Program of Mass General Hospital for Children

Individuals with and without Down syndrome can experience harmful symptoms and complications from the flu. The best way to avoid catching the flu is to get the flu vaccine each year. To learn more abo

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

Antibodies Against Measles

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

We were recently contacted regarding the testing for antibodies (immunity) against measles as part of a pre-employment physical. This is a common request for jobs in health care and for some colleges.

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

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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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