What is Down syndrome?
Down syndrome is a relatively common birth defect caused by extra genetic material from chromosome 21 (ie, there are 3 copies of chromosome 21 rather than 2). This syndrome affects the physical and intellectual development of the child.
How common is it?
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About 4,000 children with Down syndrome are born each year.
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Women of any age can have a baby with Down syndrome, but the risk increases in women older than 35 years.
What are some characteristics of children with Down syndrome?
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Down syndrome causes intellectual disabilities and characteristic facial and physical features, and can be associated with internal malformations.
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All children are different and will have various levels of ability.
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The degree of intellectual disability can be mild, moderate, or severe.
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Medical complications may include heart defects, hearing loss, frequent ear infections, sleep apnea, thyroid disease, and eye disease including cataracts.
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Other rare complications include leukemia, intestinal blockage (atresia), seizures, and hip dislocation.
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A condition called atlantoaxial instability, where the neck bones can slide and cause spinal cord compression, is a risk.
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Children with Down syndrome
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Tend to be short.
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Tend to have low muscle tone.
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May become overweight.
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May be more prone to dental and gum disease.
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May be more susceptible to respiratory infections (colds).
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May get more complications from colds.
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Who is the treatment team?
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Children with Down syndrome frequently receive services from early intervention or special child health services for physical, occupational, or speech therapy.
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Children who are younger than 3 years may receive therapies through
early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. -
For children 3 years and older,
special education and related services are available through the public school to provide the accommodations necessary for school achievement. -
Children with Down syndrome will have a primary care provider in their medical home and may have subspecialists involved in their care if they have other specific medical conditions (eg, a pediatric cardiologist for a congenital heart problem).
What adaptations may be needed?
Medications
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Children with Down syndrome do not need specific medications for their syndrome, but they may take medications for an associated condition.
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Children with heart defects may take a diuretic to reduce fluid in their body or a medication to make the heart contract better.
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Children with thyroid disease may take medication to control their condition.
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Annual flu vaccine is recommended for all children and can be especially important for children with Down syndrome who have associated conditions.
Dietary considerations
A special diet may be recommended if medical complications such as obesity or heart conditions are present.
Physical environment
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Special equipment
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Children with Down syndrome who have hearing loss may need to wear hearing aids.
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Children with eye disease may need glasses or eye patches.
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Develop strategies for accommodating children with Down syndrome. Suggestions include
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Children with poor muscle tone, coordination challenges, or limited mobility may need additional help, special exercises, or customized activities.
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Because of the risk of atlantoaxial instability, activities with extreme neck flexion such as somersaults should be avoided. The benefit of doing special radiographs to help determine the risk of neck problems is controversial.
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Early intervention services such as physical, occupational, or speech therapy may be required and can often be incorporated into other program activities.
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Other children may need help in understanding the differences in these students.
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Children with Down syndrome often have good social skills and can serve as a model for other children.
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Placement of the child in a class depending on age and developmental capabilities may need to be discussed with parents/guardians.
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What should be considered an emergency?
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No special medical emergencies are expected in children with Down syndrome other than those associated with medical complications such as congenital heart defects.
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In general emergency situations such as an evacuation for fire, children with Down syndrome may take extra preparation, time, and supervision.
What types of training or policies are advised?
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Caregivers/teachers may need training on how to adapt daily lessons and schedules to accommodate these children.
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Medication administration training may be needed.
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Specific training about the individual child’s special needs may be necessary.
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The child’s schedule may need to be adapted if individual therapy (ie, physical, occupational, speech) will take place at the program.
What are some resources?
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National Down Syndrome Congress,www.ndsccenter.org, 800/232-6372
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National Down Syndrome Society,www.ndss.org, 800/221-4602
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The Arc,www.thearc.org, 301/565-3842
Source: Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide.
Products are mentioned for informational purposes only. Inclusion in this publication does not imply endorsement by the American Academy of Pediatrics.
Listing of resources does not imply an endorsement by the American Academy of Pediatrics (AAP). The AAP is not responsible for the content of external resources. Information was current at the time of publication.
The information contained in this publication should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.