Section Heading Background Image

Search our Resources

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

Home Resources

Duration: 23 ms, Number of Results: 36

Showing 1 - 24 of 36
1 2 Next Last Page 1 of 2
item name

When Things in My Life Change Story

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

When Things in My Life Change   This visual story discusses how to manage changes that may occur throughout our lives. Additional visuals are available in the  Transitions  

item name

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

item name

Wearing My Hearing Aids Story

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

Wearing My Hearing Aids   This visual story explains why it is important to wear our hearing aids and describes when to wear our hearing aids and how to take care of them.  

item name

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

item name

Getting Ear Wax Removed

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

This Getting Ear Wax Removed Visual    explains what happens when we get our ears cleaned out. This visual can help individuals with Down syndrome know what to expect when g

item name

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

item name

Cerumen Impaction (Ear Wax Buildup)

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

Key Points Cerumen impaction is obstruction of the ear canal with ear wax. It is a problem that is more common in people with Down syndrome. There are treatments that can be done at home to prevent an

item name

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

item name

Hearing Loss in Adults with Down Syndrome

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

Overview of hearing loss Hearing involves several steps as the sound passes from the ear to the brain. The ear is divided into three parts: the outer, middle, and inner ear. Hearing impairment, which

item name

Cholesteatomas

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

What are cholesteatomas? A  cholesteatoma is a collection of skin cells that become more fibrous and build up in the middle ear (where the small bones are that are part of our hearing mechani

item name

Moving to a Group Home Story

Author: Michele Mattox, LCSW, LISW-CP - No Limits Counseling & Coaching

The story linked below talks about moving to a group home, including how to deal with new emotions and managing a schedule. Moving to a Group Home     The story was created

item name

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

item name

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

item name

Down Syndrome for the Otolaryngologist: A Review

Author: Zalzal & Lawlor - JAMA Otolaryngology - Head & Neck Surgery (2023)

Abstract Importance:  There are many features of Down syndrome that prompt referral to an otolaryngologist. As the lifetime prevalence and life expectancy of individuals with Down syndrome in

item name

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

item name

Employment Resources

Author: Ann Garcia and Jennifer Smid - Patient Advocates, Adult Down Syndrome Center

This list of resources was compiled by the patient advocates at the Adult Down Syndrome Center. Some of these resources are specific to the greater Chicagoland area and/or Illinois. If you are looking

item name

College and Vocational Training Resources

Author: Ann Garcia - Patient Advocate, Adult Down Syndrome Center

This list of resources was compiled by Ann Garcia, patient advocate at the Adult Down Syndrome Center. Most of these resources are specific to the greater Chicagoland area and/or Illinois. If

item name

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

item name

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

item name

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

item name

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

item name

Evaluation of Upper Airway Stimulation for Adolescents with Down Syndrome and Obstructive Sleep Apnea

Author: Yu et al. (2022) - JAMA Otolaryngology-Head & Neck Surgery

Abstract Importance :  Patients with Down syndrome have a high incidence of persistent obstructive sleep apnea (OSA) and limited treatment options. Upper airway hypoglossal stimulation has be

item name

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

item name

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.

Showing 1 - 24 of 36
1 2 Next Last Page 1 of 2
 

 

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.

Ask a Question

Join Our Email List Opens in new window

Close