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

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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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Story About Grooming/Hygiene for Girls

Author: Katie Frank, PhD, OTR/L

This visual handout explains what we need to do to take care of our bodies.

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Story About Grooming/Hygiene for Boys

Author: Katie Frank, PhD, OTR/L

This visual handout explains what we need to do to take care of our bodies.

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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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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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Prevalence of Endocrine Disorders Among 6078 Individuals with Down Syndrome in the United States

Author: Rivelli et al. - Journal of Patient-Centered Research and Reviews

Abstract Findings from a recent study describing prevalence of common disease conditions in the largest documented cohort of individuals with Down syndrome (DS) in the United States strongly suggested

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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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Adaptive Clothing

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

Dressing can be difficult for some individuals with Down syndrome, in part because bilateral coordination and dexterity skills can be challenging for many individuals with Down syndrome. I ha

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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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Gout in People with Down Syndrome

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

Gout is more common in people with Down syndrome (DS) (as indicated by the studies at this link  and this link ). Gout is a type of inflammatory arthritis caused by

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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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Bathing and Showering Tips

Author: Natalie Rivera, OTS and Katie Frank, PhD, OTR/L - Occupational therapy student and occupational therapist

Bathing and showering may be difficult for some individuals with Down syndrome for many reasons. Below are a variety of adaptive strategies and equipment to promote safety and independence with this s

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Does TSH tell the whole story?

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

Thyroid conditions such as hypothyroidism (underactive thyroid) and hyperthyroidism (overactive thyroid) are more common in people with Down syndrome. Current guidelines for adults with Down syndrome

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Tips for Washing and Rinsing Hair in the Shower

Author: Adult Down Syndrome Center

Some families have shared with us that washing and rinsing hair can be a challenging task for their loved ones with Down syndrome. We have compiled a list of suggestions from families for mak

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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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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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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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Lotion Options

Author: Adult Down Syndrome Center

Some people do not like the feeling of lotion or creams. This handout shows examples of lotions that can be used on wet skin and lotions that can be sprayed on skin.

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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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