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

Duration: 10 ms, Number of Results: 76

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Grief and Loss Podcast Episodes

Author: Rose Reif, LCMHC, CRC, BC-TMH - Multiple Organizations

Rose Reif, a licensed clinical mental health counselor, certified rehabilitation counselor, and qualified developmental disability and mental health professional, has been featured on two podcast epis

Immunotherapy Responsiveness and Risk of Relapse in Down Syndrome Regression Disorder

Author: Santoro et al. - Translational Psychiatry (2023)

Abstract Down syndrome regression disorder (DSRD) is a clinical symptom cluster consisting of neuropsychiatric regression without an identifiable cause. This study evaluated the clinical effectiveness

Story About Getting My Period

Author: Katie Frank, PhD, OTR/L

This visual explains what happens when a woman gets her period.

Story About How to Change My Tampon

Author: Katie Frank, PhD, OTR/L

This visual explains how to change a tampon when a woman has her period.

Story About When to Change My Menstrual Hygiene Product

Author: Katie Frank, PhD, OTR/L

This visual explains that women need to change their pad, tampon, or period panties throughout the day when they have their period.

Story About How to Change My Period Panties

Author: Katie Frank, PhD, OTR/L

This visual explains how to change period panties when a woman has her period.

Story About How to Change My Pad

Author: Katie Frank, PhD, OTR/L

This visual explains how to change a pad when a woman has her period.

Staff Turnover

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

For people living in a group home or participating in day programs, the staff members often become like family. This is especially true if the person does not have other family involved in his life bu

Information on COVID-19 Booster Shots from the Adult Down Syndrome Center

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

We are in the process of updating this resource. Please see the CDC website for the current recommendations. UPDATED May 10, 2023 The physicians of the Adult Down Syndrome Center recommend that indivi

Information Forms to Share with Hospitals and Clinics

Author: Adult Down Syndrome Center - Resources

Visiting a hospital or clinic can be a stressful or frightening experience for some individuals with Down syndrome. The stress and fear can be increased if the healthcare providers are unfami

Activities You Can Do at Home

Author: Adult Down Syndrome Center - Resource List

Are you looking for suggestions of activities you can do at home? We have compiled a list of some ideas below! There are ideas for arts and crafts , cooking , education/learning , fitness and physical

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

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

Long COVID in Adults with Intellectual Disabilities

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

A complication of having COVID-19 infection is a condition called long COVID (it has also been called long-haul COVID, chronic COVID, post-COVID conditions, and others). The National Task Group on Int

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. (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

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

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

Recommendations for Treatment of Mild to Moderate COVID-19 Infection

Author: Brian Chicoine, MD, Erin Dominiak, MD, and Hannah Graham, MD - Adult Down Syndrome Center

We have only seen or heard of a few cases of severe COVID-19 infection in our patients with Down syndrome who have received COVID-19 vaccines. Our experience has been consistent with the data

Ableism at the Bedside: People with Intellectual Disabilities and COVID-19

Author: Chicoine et al. - The Journal of the American Board of Family Medicine (2022)

Abstract People with intellectual and developmental disabilities have a higher risk of mortality from COVID-19 than the general population. Providers may assume that this is due to the burden of comor

COVID-19 Vaccination of Individuals with Down Syndrome - Data from the Trisomy 21 Research Society Survey

Author: Huls et al. - Vaccines (2022)

Abstract Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS

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

Immune Response to COVID-19 Vaccines

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

We have shared both our clinical experience and studies that demonstrate clinical effectiveness and safety of COVID-19 vaccines in people with Down syndrome. However, until recently, studies have not

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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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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