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

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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

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

Author: Santoro et al. - 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. ECT can be frightening

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

Author: Santoro et al. - 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

Using Games in Social Skills Groups

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

We have found that incorporating games into our social skills groups can help convey important messages as well as help participants practice appropriate social skills in a non-threa

Kidney Function in People with Down Syndrome

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

We frequently see that the lab values of kidney function of people with Down syndrome (DS) we evaluate at our Center are mildly abnormal. The kidney function is slightly decreased compared to what is

Using "I" Statements

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

We discuss "I" statements in our social skills groups for individuals with Down syndrome. "I" statements are a way to share how we feel in a clear, calm, and respec

Group Rules

Author: Adult Down Syndrome Center - Resource List

We go over "group rules" at the beginning of every in-person and virtual group for individuals with Down syndrome that we facilitate at the Adult Down Syndrome Center. We th

Tips for Running Virtual Social Groups

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

Since April, staff at the Adult Down Syndrome Center have been hosting online socials and social skills groups via Zoom. Our goal is to encourage social participation and engagement while we maintain

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

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

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

Treating Gastroesophageal Reflux Disease with Surgery

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

We were asked about surgical options for treating gastroesophageal reflux disease (GERD). GERD occurs when stomach contents, including acid, go "backwards" from the stomach up into t

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

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-

Lactose Intolerance

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

People with Down syndrome can experience a variety of gastrointestinal issues. One of them is intolerance to foods containing lactose. Lactose is a sugar found in dairy products like milk and ice crea

Personal Space

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

Our OT Katie Frank and I led another very exciting social skills group this month for patients 18 and over! We talked about a very important issue – personal space. Understanding personal sp

Reciprocal Conversations

Author: Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

Our occupational therapist, Katie Frank, and I have been running some social skills groups. We have had such demand that we have started to offer two different groups, one for ages 12-17 and one for a

Catatonia in Down Syndrome: A Treatable Cause of Regression

Author: Ghaziuddin et al. (2015) - Neuropsychiatric Disease and Treatment (2015)

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

Rate of Urinary Retention in Adults with Down Syndrome

Author: Chicoine & Sulo - Journal of the American Board of Family Medicine (2015)

Abstract Purpose:  Down syndrome (DS) is associated with a higher incidence of many medical conditions, but little information regarding urinary retention exists. We assessed the urinary rete

The Utility of Anti-Tissue Transglutaminase Antibody-IgA (tTG-IgA) Testing for Celiac Disease in Adults with Down Syndrome

Author: Chicoine, Parikh, Sulo, & Chicoine - American Journal of Clinical Medicine

Abstract Objectives:  We assessed the diagnostic accuracy of the anti-tissue transglutaminase IgA antibody (tTG-IgA) test compared to esophagogastroduodenoscopy (EGD) in adults with Down&

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