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

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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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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 Probiotics by People with Down Syndrome

Author: Adult Down Syndrome Center - Resource

What are probiotics? Probiotics are foods or supplements that contain live microorganisms (e.g., bacteria). Foods with labels that say "live and active cultures" contain probiotics.

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

Author: Down Syndrome-Autism Connection - Website

It is estimated that 16-18% of people with Down syndrome also have autism spectrum disorder. The Down Syndrome-Autism Connection  is a nonprofit organization that provides s

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Liver Fibrosis

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

Fibrosis of the liver can be thought of as a "scar" in the liver that results from chronic liver injury. It is similar to scarring that may form on the skin or in the lung or other o

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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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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

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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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Recreational and Social Opportunities

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

This list of resources was compiled by Grace O’Connor and Ann Garcia, patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland are

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Alternatives to Workshops

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

Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking for resources in another region, we recommend reaching out to a local Down syndrome parent orga

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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 f

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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

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Attending a Summer Camp

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

It may be hard to believe when many of us are still shivering in our winter coats, but summer is just around the corner! Summer is not only a time to soak up sunshine and enjoy family vacations but a

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Down Syndrome and Autism

Author: National Down Syndrome Society - Website

The  Down Syndrome and Autism    page on the National Down Syndrome society's website has information and resources about the dual diagnosis of Down syndrome and aut

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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

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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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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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