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Proprioceptive Input

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

Many individuals with Down syndrome (DS) experience difficulty with their proprioceptive system. The proprioceptive sensors in our body are responsible for providing feedback so we know where our body

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Regression & Down Syndrome

Author: National Down Syndrome Society - Website

The Regression & Down Syndrome page on the National Down Syndrome Society's website has information about Down syndrome regression disorder including symptoms, treatment, and resources

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Behavior Changes in Individuals with Down Syndrome Webinar Recording (2/23/2023)

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

The video below is a recording of a webinar presented by Brian Chicoine, MD, Katie Frank, PhD, OTR/L, and Abby Rowley, LCSW, on February 23, 2023. In this webinar, the presenters define, iden

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Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

Regression in Persons with Down Syndrome: Current Consensus Update for Families   In January 2023, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for fam

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Acrocyanosis

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

What is acrocyanosis? Acrocyanosis is the bluish discoloration of the extremities (usually the hands and/or feet) due to decreased oxygen being delivered to those areas. The small blood vessels in the

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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

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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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Tips for a Sensory-Friendly Haircut

Author: Monica Prindiville, OTS and Katie Frank, PhD, OTR/L - Occupational Therapy Student and Occupational Therapist

While many find a trip to the salon or barbershop relaxing and look forward to their new look, getting a haircut can be an uncomfortable and even frightening experience for those with sensory

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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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Sensory Processing Strategies to Promote Mental Wellness in People with Down Syndrome Webinar Recording (5/11/2022)

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

The video below is a recording of a webinar presented by Katie Frank, PhD, OTR/L of the Adult Down Syndrome Center. Dr. Frank is an occupational therapist at the Center. In the webinar, she describes

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Unexplained Weight Loss

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

What can cause unexplained weight loss? We were sent a question about unexplained weight loss. We are sharing some information here for general knowledge and/or information that can be used in consult

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Weighted Blankets

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

The use of weighted blankets is a sensory technique that provides deep pressure stimulation. Evidence suggests that deep pressure stimulation produces a calming effect to the autonomic nervous system

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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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Possible Causes of Hair Loss

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

Hair loss can occur for many reasons. Some of these may include:  Age is a common cause not only for men but for women, too. Alopecia is an autoimmune condition (condition in which the body&a

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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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Eating Refusal

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

We received the following question:  I have a son with Down syndrome. He had testicular cancer in his late 20s. Since then, he seems to have developed an eating disorder. He always feels he i

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Sensory Processing and Down Syndrome

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

The Sensory System No one has a perfectly functioning sensory system. We all have sensory preferences and even sensory needs, each unique to how our central nervous system perceives and processes sens

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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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Behavior Changes in Adolescents and Adults with Down Syndrome Webinar Recording (4/28/2020)

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 April 28, 2020. Dr. Chicoine is the co-founder and medical director of the Adult Down Syndrom

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Temperature Regulation in People with Down Syndrome

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

We were sent a question about the typical body temperature of people with Down syndrome and how they regulate their body temperature.  Body Temperature of People with Down Syndrome Our review

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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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