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

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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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Toilet Hygiene

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

Thorough toilet hygiene is difficult for many individuals with Down syndrome. However, there are several options to increase independence and success with toilet hygiene. Use pre-moistened wipes . Be

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Tips for Managing Medications

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

Whether on one medication or many, people with and without Down Syndrome have difficulty taking medication as prescribed. The following tips can help simplify medication management and prevent missed

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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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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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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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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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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

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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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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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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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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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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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