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

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Urinary Retention

Author: Agni Vlahos, MD and Brian Chicoine, MD - Family Medicine

Key Points Urinary retention is the build-up of excessive urine in the bladder. It appears to be more common in people with Down syndrome. A common reason for urinary retention in people with Down syn

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Urinary Tract Infections (UTIs)

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

Key Points Urinary tract infections (UTIs) are infections of the urethra, bladder, ureters, and/or kidneys. People with Down syndrome have risk factors for getting a UTI due to issues related to not e

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Pneumonia in People with Down Syndrome

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

Key Points Lungs are vital organs in the movement of oxygen into the body and the removal of carbon dioxide. Pneumonia is an infection of the lungs. Pneumonia is more common in people with Down syndro

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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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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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Alternatives to Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Families trying to decide what level of support would work best for their adult family member with Down syndrome may want to look at options besides guardianship . Individuals with Down syndrome and t

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Guardianship

Author: Ann Garcia, Patient Advocate - Resource List

Whether you decide to obtain guardianship for your child is an individual family decision that should be considered carefully. If your child is 18 years old and is unable to make decisions about finan

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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

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Diagnostic Overshadowing: "All Is Not Down Syndrome"

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

Many families have reported that, when they have told a health care provider about a symptom their loved one with Down syndrome is experiencing, the provider has, in effect, said, “It is jus

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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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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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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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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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Financial Wellness: A Guide for Individuals with Disabilities, their Families and Caregivers

Author: National Down Syndrome Society - In collaboration with Voya Cares

In collaboration with Voya Cares, the National Down Syndrome Society published a guidebook on financial wellness. Topics include the basics of financial wellness, government benefits, workplace benefi

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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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Modeling, Imitation, and Mutual Participation

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

Observing someone demonstrate appropriate behavior, watching a parent or friend model healthy activity, or having a mentor to observe and imitate are all ways we learn a variety of healthy behaviors i

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People First

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

When we started the clinic, families spoke to us about what they needed as well as what they expected and what was most likely to help us connect with families and people with Down syndrome. One of th

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Memorial/Life Celebration

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

I spoke at a patient’s memorial/life celebration a few days ago and I would like to share some of my words. I would like to go back to 1954, the year Don was born. Life expectancy of a perso

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Expectations

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

As we mention in our resource on Two Syndromes , there seem to be four main reasons for the differences noted in the different generations of people with Down syndrome – expectations , life

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Goals

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

As we mention in our resource on Two Syndromes , there have been changes over time that have contributed to some of our families with younger children with Down syndrome not relating to the l

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Life Expectancy

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

As we mention in our resource Two Syndromes , there are four main areas that we see are affecting people with Down syndrome in a positive way. The effect has been so great in some situations

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Opportunities

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

Over the years, some families have approached us after presentations and reported they couldn’t relate to a story or a point we made. We have found that it was typically a family of a younge

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Two Syndromes

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

Occasionally, after a presentation, someone will come up to Dr. McGuire or me and tell us that they can’t relate to some point that we made. After hearing this a few times, a pattern became

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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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