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

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

UPDATED MAY 2024 Recommendation The physicians at the Adult Down Syndrome Center recommend that individuals with Down syndrome ages 12 years and older who do not have a contraindication follo

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Breast Cancer and Breast Cancer Screening for Women with Down Syndrome

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

Key Points Breast cancer is less common in women with Down syndrome compared to women without Down syndrome. Currently, the recommendations for breast cancer screening are the same for women with and

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When Staff Members Leave Story

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

When Staff Members Leave   This visual story explains why staff members may leave their job, how we might feel, and how to cope with the change. Additional visuals are available in the&nb

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Coping with Grief Story

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

The visual below explains how we might feel when someone we care about dies and shares things we can do to help us cope.    Coping with Grief       &nb

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When a Pet Dies Visual

Author: Abby Rowley, LCSW - Licensed Clinical Social Worker, Adult Down Syndrome Center

This visual explains what happens when a pet dies and how it might make us feel. When a Pet Dies     Other visuals are available in the Grief and Loss section of our Resource Library

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Changes in Gait (Ambulation, Walking)

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

Key Points A change in gait (walking) is a change seen in many people with Down syndrome. There are many possible causes for those changes. Family or other observers can play a critical role in assess

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Prostate Cancer Screening in Men with Down Syndrome

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

Key Points on Prostate Cancer Prostate cancer is one of the most common types of cancer in men. There is uncertainty about the potential benefits and risks of prostate cancer screening for men.&nb

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Dysgerminomas in Women with Down Syndrome

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

Key Points A dysgerminoma is a type of cancer that usually occurs in a woman's ovary. There is limited research on dysgerminomas in women with Down syndrome. It is not clear if dysgerminomas a

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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

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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

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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   The Down Syndrome Medical Interest Group - USA (DSMIG-USA) developed a consensus update for families on Down

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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

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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

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Information Forms to Share with Hospitals and Clinics (Health Passports)

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

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Keratoconus in People with Down Syndrome

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

We received a question about treatment of keratoconus in people with Down syndrome.  What is keratoconus? Keratoconus is an eye condition in which the cornea (the clear part in the front of t

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Regression & Down Syndrome

Author: National Down Syndrome Society - Oveview

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

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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

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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. - 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. ECT can be frightening

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Evidence of Neuroinflammation and Immunotherapy Responsiveness in Individuals with Down Syndrome Regression Disorder

Author: Santoro et al. - 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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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

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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

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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

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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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