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

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Nutrition and Hydration Apps

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

There are numerous factors to consider when deciding what to eat and drink including nutritional content, dietary restrictions and allergies, convenience, cost, and taste preferences. The apps listed

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

Obstructive Sleep Apnea, Cerebrovascular Disease, and Amyloid in Older Adults with Down Syndrome Across the Alzheimer's Continuum

Author: Lao et al. (2022) - Sleep Advances: A Journal of the Sleep Research Society

Abstract We determined the extent to which obstructive sleep apnea (OSA) is associated with increased cerebrovascular disease and amyloid burden, and the relation of the two processes across clinical

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 stimulatio

Vitamin B12 Deficiency

Author: Brian Chicoine, MD - Adult Down Syndrome Center

Vitamin B12 deficiency is an issue that we often check for in individuals who receive medical care at the Adult Down Syndrome Center. We usually get enough vitamin B12 from the foods we eat. Vitamin B

Advancements in the Treatment of Obstructive Sleep Apnea Webinar Recording (11/8/2021)

Author: Michael Layland, MD - Otolaryngologist

The video below is a recording of a webinar presented by Dr. Michael Layland on November 8, 2021. Dr. Layland is an otolaryngologist at the Ear Nose & Throat Center and Advocate Lutheran Gener

Create a Bedtime Routine Visual

Author: Katie Frank, PhD, OTR/L

This document includes a template and images that individuals with Down syndrome and their families can use to create a bedtime routine visual.

Tips for Staying Hydrated

Author: Adult Down Syndrome Center - Resource List

A common recommendation we give to individuals with Down syndrome who come to our clinic is to drink more fluids. Many people with Down syndrome we see are at least mildly dehydrated

Water Tracker

Author: Adult Down Syndrome Center

This handout can be used to mark off how much water you drink each day.

Weight Management in Adults with Down Syndrome

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

Weight management can be challenging. It is likely that part of the reason is that there are factors for which our understanding is limited. While a great deal has been learned, more research is being

Regression in Persons with Down Syndrome

Author: Down Syndrome Medical Interest Group - USA - Current Consensus Update for Families

In October 2021, the Down Syndrome Medical Interest Group - USA (DSMIG-USA) shared a consensus update for families called "Regression in Persons with Down Syndrome." The res

Night Terrors in People with Down Syndrome

Author: Brian Chicoine, MD - "Ask Dr. Chicoine" LuMind IDSC Foundation

Night terrors (or sleep terrors) are described as a sudden arousal from sleep associated with sitting up in bed, intense fear, and a piercing scream. Symptoms include increased heart rate, increased r

Products to Assist with Portion Control

Author: Adult Down Syndrome Center - Resource List

Managing portion sizes of foods can be challenging for people with and without Down syndrome. Below are some products that may help with portion control. Many of these products can be found at retaile

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

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.

Guide to Healthy Drinking

Author: Adult Down Syndrome Center

This handout uses a stoplight to help individuals with Down syndrome know what drinks to consume everyday (green), sometimes (yellow), and on special occasions (red).

Guide to Healthy Eating

Author: Adult Down Syndrome Center

This handout uses a stoplight to help individuals with Down syndrome know what foods to eat everyday (green), sometimes (yellow), and on special occasions (red).

Sleep Disorders in Adults with Down Syndrome

Author: Gimenez, Altuna, Blessing, Osorio, & Fortea - Journal of Clinical Medicine (2021)

Abstract: Sleep disorders, despite being very frequent in adults with Down syndrome (DS), are often overlooked due to a lack of awareness by families and physicians and the absence of specific clinica

Healthy Pace for Eating Handout

Author: Adult Down Syndrome Center

This visual shows steps to take to have a healthy pace for eating. Take a bite, put the fork down, chew 5-10 times, swallow the food, take a small drink, pick up your fork and start all over.

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

Eating Refusal

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

We received the following question:  I have a son with Down syndrome. He had testicular cancer in his late 20s. Since then, he seems to have developed an eating disorder. He always feels he i

Addressing Challenges with Falling or Staying Asleep

Author: Brian Chicoine, MD and Katie Frank, PhD, OTR/L - Adult Down Syndrome Center

We frequently receive questions about sleep. Individuals with Down syndrome and/or their families report that they have difficulty falling asleep or staying asleep. In this article, we will share stra

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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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