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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

Obstructive Sleep Apnea, Cerebrovascular Disease, and Amyloid in Older Adults with Down Syndrome Across the Alzheimer's Continuum

Author: Lao et al. (2022) - Sleep Advances: A Journal of the Sleep Research Society

Abstract We determined the extent to which obstructive sleep apnea (OSA) is associated with increased cerebrovascular disease and amyloid burden, and the relation of the two processes across clinical

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

Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance   Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulatio

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

Advancements in the Treatment of Obstructive Sleep Apnea Webinar Recording (11/8/2021)

Author: Michael Layland, MD - Otolaryngologist

The video below is a recording of a webinar presented by Dr. Michael Layland on November 8, 2021. Dr. Layland is an otolaryngologist at the Ear Nose & Throat Center and Advocate Lutheran Gener

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

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

Night Terrors in People with Down Syndrome

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

Night terrors (or sleep terrors) are described as a sudden arousal from sleep associated with sitting up in bed, intense fear, and a piercing scream. Symptoms include increased heart rate, increased r

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.

Sleep Disorders in Adults with Down Syndrome

Author: Gimenez, Altuna, Blessing, Osorio, & Fortea - Journal of Clinical Medicine (2021)

Abstract: Sleep disorders, despite being very frequent in adults with Down syndrome (DS), are often overlooked due to a lack of awareness by families and physicians and the absence of specific clinica

Epilepsy in Down Syndrome: A Highly Prevalent Comorbidity

Author: Altuna, Gimenez, & Fortea - Journal of Clinical Medicine (2021)

Abstract Individuals with Down syndrome (DS) have an increased risk for epilepsy during the whole lifespan, but especially after age 40 years. The increase in the number of individuals with DS living

Stroke and Vascular Disease in Down Syndrome Webinar Recording

Author: Jonathan Santoro, MD - Director of Neuroimmunology and Demyelinating Disorders Program at Children's Hospital Los Angeles, Assistant Professor of Neurology at the Keck School of Medicine at the University of Southern California

The webinar below was hosted by the Down Syndrome Association of Los Angeles. The topic was "Stroke and Vascular Disease in Down Syndrome: How to Identify and Prevent." The presenter

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

Tourette Syndrome and Down Syndrome

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

Tourette syndrome (TS) is a hereditary, chronic neuromuscular condition consisting of motor and vocal tics. Tics are sudden, involuntary, brief, repetitive movements and vocalizations.  Motor

Addressing Challenges with Falling or Staying Asleep

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

We frequently receive questions about sleep. Individuals with Down syndrome and/or their families report that they have difficulty falling asleep or staying asleep. In this article, we will share stra

Sleep in Adolescents and Adults with Down Syndrome Webinar (8/4/2020)

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Webinar

The video below is a recording of a webinar presented by Brian Chicoine, MD and Katie Frank, PhD, OTR/L on August 4, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

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

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