The National Advocate for People with Down Syndrome Since 1979

National Down Syndrome Society
666 Broadway, 8th Floor
New York New York 10012
800-221-4602
info@ndss.org 

Ages 13 - 21

DOWN SYNDROME HEALTH CARE GUIDELINES

Based on “Health Supervision for Children with Down Syndrome” published in Pediatrics (Vol. 128, No. 2, August 1, 2011.  pp. 393 -406.) 
  
An electronic version can be accessed here: http://aappolicy.aappublications.org
(Search: Health Supervision for Children with Down Syndrome) 
   
  • Thyroid function test annually (TSH).
  • Annual ear-specific auditory testing.
  • Annual Review signs and symptoms of myelopathy. If myelopathic signs exists, obtain neck X-rays (C-spine). Contact physician if change in gait, change in the use of arms or hands, change in bladder function, neck pain, head tilt, torticollis, or new-onset weakness. (Note: Some athletic organizations might require a radiograph of the C-spine for entry and participation.)
  • Hemoglobin count annually. Include (a) ferritin and CRP or (b) reticulocyte hemoglobin. (CHr if there is a concern for iron deficiency.
  • Review signs and symptoms for obstructive sleep apnea.
  • Review for symptoms of celiac disease and obtain IgA and TTG-IgA if symptoms present.
  • Review behavior and social progress.
  • Examine annually for acquired mitral and aortic valvular disease in older patients with Down syndrome.
  • Ophthalmologic exam, looking especially for keratoconus and cataracts (every three years).
  • Use typical growth charts from Centers for Disease Controls (CDC), available at  www.cdc.gov/growthcharts. Use body-mass index (BMI) to assess weight proportionality. Maintain healthy diet and structured exercise program.
  • Continue speech and language therapy, as indicated.
  • Facilitate transition: guardianship, financial planning, behavioral problems, school placement, vocational training, independence with hygiene and self-care, group homes, work settings.
  • Discuss sexual development and behaviors, contraception, sexually transmitted diseases, recurrence risk for offspring.
  • Discuss physical and psychosocial changes through puberty, need for gynecologic care in the pubescent female.
  • Review signs and symptoms for obstructive sleep apnea.
  • Referral to local Down syndrome parent group or family support and resources, as indicated. Referral to NDSS.

 

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