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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 - Medical Director, Adult Down Syndrome Center

Title:  Alzheimer's Disease Prevention and Healthy Aging in People with Down Syndrome Date:  May 18, 2022 Presenter:  Brian Chicoine, MD Host Organization:  

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Menopause in Women with Down Syndrome

Author: Hannah Graham, MD - Adult Down Syndrome Center

What is menopause? Menopause is the point in a woman’s life when she no longer has menstrual cycles. It typically occurs when a woman is in her late 40s to 50s and is diagnosed afte

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Common Symptoms Associated with Menstruation (Periods)

Author: Hannah Graham, MD - Adult Down Syndrome Center

Many women with Down syndrome experience symptoms associated with their period. When those symptoms are consistent or more severe, women are sometimes diagnosed with premenstrual syndrome (PMS) or pre

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PMS and PMDD in Women with Down Syndrome

Author: Hannah Graham, MD - Adult Down Syndrome Center

Premenstrual syndrome (PMS) and premenstrual dysphoric disorder (PMDD) are psychological and physical symptoms which are related to hormone changes that occur during a woman's menstrual cycle.

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Birth Control in Women with Down Syndrome

Author: Hannah Graham, MD - Adult Down Syndrome Center

Birth control encompasses a wide range of strategies and medications used to prevent pregnancy. Besides preventing pregnancy, some of the medications may be used to treat other common symptoms of mens

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My ECG/EKG

Author: Adult Down Syndrome Center

This visual explains what happens when you get an ECG or EKG.

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Menstruation (Period) Visuals

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

Story About Getting My Period   Story About How to Change My Pad   Story About How to Change My Tampon   Story About How to Change My Period Panties   Story About W

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When Veins Don't Work

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

What is the vascular system? Our vascular system includes blood vessels (including veins, arteries, and smaller blood vessels) as well as the heart. Arteries carry blood away from the heart towards th

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Menstrual Hygiene

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

One topic that comes up frequently at the Adult Down Syndrome Center is menstrual hygiene. Women with Down syndrome and their caregivers often ask us about strategies to make periods easier or even to

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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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Pelvic Exam Social Story

Author: PA ASERT and SexEdVA - Resource List

The social stories linked below are intended to help individuals with Down syndrome and other developmental or intellectual disabilities prepare for and feel more comfortable with getting a pelvic exa

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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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Heart Disease in Adults with Down Syndrome Between 1996 and 2016

Author: Fitzpatrick et al. - Journal of the American Board of Family Medicine (2020)

Abstract Purpose:  To describe demographic factors and calculate prevalence of heart disease-related conditions among the adult Down syndrome (DS) sample population and to compare demographic

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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

Title:  Mental Wellness and Aging in Adults with Down Syndrome Date:  October 27, 2020 Presenter:  Brian Chicoine, MD Host Organization:  Down Syndrome Association

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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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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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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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