Talib - DSG presentation 2019 JK 22

Hypoglossal Nerve Stimulator

Thyroid Disease

• Thyroid disease is an autoimmune condition
• AAP recommends yearly thyroid function tests for children
• There is a lack of consensus on the frequency of checking

thyroid test for asymptomatic adults with Down syndrome
• People with Down syndrome are at an increased risk for

autoimmune issues

Thyroid testing

• Check thyroid function tests for adults with DS:

– Were EVER treated with thyroxine
– Have positive auto-antibodies to the thyroid
– FH of autoimmune thyroid disease

• Check thyroid function test if there are
symptoms

Hearing impairment

• Studies have shown hearing impairment in adults with Down
syndrome as high as 73%

• 100% of adults with Down syndrome >60 years of age had some
hearing loss

• All adults recommended to have hearing screened >40 years old

• Consider this with concern for depression or functional decline

Regression

• Loss of behavior or skills that had been well established

– Verbal skills
– Motor skills
– Social skills

• Most importantly-

– That cannot be found to be explained by another issue

Regression

• Times of changes • Death of a loved one

– Major or minor change to – Family
us
– Pet
– Must only be major to the
individual • Moving house
• Changing rooms
• Graduation

Regression

• Consider evaluating for underlying medical issues

– OSA
– Thyroid diseases
– Hearing impairment
– Pain!

• Joint
• Constipation

– Depression

Dementia/Alzheimer's

• Alzheimer’s is a specific
form of dementia

– Amyloid plaques in brain
– Ongoing research evaluating

plaques and dementia

Dementia in adults with Down
syndrome

• Rare before the age of 40
• 40-49: 11%
• 60-69: 77%

59

Alzheimer’s symptoms

• Less enthusiasm • Sleep disturbances

• Poor attention • Seizures that start in
adulthood
• Sadness, fearfulness,
anxiety • Change in coordination
or walking
• Irritability, aggression,
uncooperativeness

Alzheimer’s-what to do

• Age 35: documented abilities in medical record
• Monitor for changes
• Neurology (dementia) evaluation
• Consider other medical issues

– Hearing, sight, thyroid function, sleep

Dementia Research

• By 40, most people with Down syndrome have amyloid plaques

• 50% of people with Down syndrome develop symptoms of
Alzheimer’s

• Symptoms show up at age 50 or 60

• Why?? Studies on

– Behavioral changes - Treatment

– Brain scans - Biomarkers

Research

• NIH: 2015 $37 million research in Alzheimer’s in
people with Down syndrome

• National Institute of Aging

– DS-Connect®: The Dow

– LuMind Research Down Syndrome Foundationn Syndrome
Registry

Immunizations

• All children with DS should be immunized according to ACIP
recommendations

• Vaccine preventable diseases

– are still with us
– can be life-threatening

• Non-immunized individuals

– are at risk of developing preventable diseases
– can be carriers of life-threatening diseases to vulnerable people around

them

Children’s Mercy Hospital
Down Syndrome Clinic

• Multidisciplinary clinic

– Pediatrician and Adolescent Physician
– Occupational Therapist
– Speech Pathologist
– Registered Dietician
– Audiologist (ENT if needed)
– Behavior Specialist
– Social Work
– Team Coordinator
– Genetic Counselor

Contact Information

For Appointments please call (816) 960-2856 or Toll Free: (844) 960-2989
For Medical related questions please contact Karen Horne, RN at (816) 960-2864

Email: [email protected]
Clinic Locations

Children’s Mercy Adele Hall Campus
2401 Gillham Rd. Kansas City, MO 64108

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Children’s Mercy College Boulevard
5520 College Blvd. Overland Park, KS 66211
Visit our Website at childrensmercy.org/downsyndrome

© The Children's Mercy Hospital 2017

Resources

• American Academy of Pediatrics: Health Supervision for children
with Down syndrome:
http://pediatrics.aappublications.org/content/early/2011/07/21/peds.2
011-1605

• National Down Syndrome Society: www.ndsccenter.org
• Down Syndrome-Autism Connection http://ds-asd-connection.org/

Resources

• Alzheimer’s Association: www.alz.org
• National Institute on Aging:

www.nia.gov/health/alzheimers-disease-people-
down-syndrome