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.)
- Review chromosome analysis; genetic counseling, if not already done. Discuss chances of having another child with Down syndrome.
- Use typical growth charts from Centers for Disease Control (CDC), available at www.cdc.gov/growthcharts. Use weight/height assessment, as well.
- Radiographic swallowing assessment if marked low muscle tone, slow feeding, choking with feeds, recurrent or persistent respiratory symptoms, failure to thrive. Consider feeding therapy referral, if needed.
- At one year of age begin to check hemoglobin count annually. Include (a) ferritin and CRP or (b) reticulocyte hemoglobin if there is a concern for a diet low in iron.
- Eye exam for cataracts, nystagmus and strabismus by 6 months if not done at birth.
- Ophthalmology referral if needed for nasolacrimal duct obstruction.
- Delayed or irregular dental eruption, hypodontia is common. First dental visit by one year.
- If constipation present, evaluate for limited diet or fluids, hypotonia, hypothyroidism, gastrointestinal malformation, or Hirschsprung disease.
- Discuss cervical spine positions, especially for anesthesia or surgical or radiologic procedures.
- Review signs and symptoms of myelopathy. If myelopathic signs exists, obtain neck X-rays (C-spine).
- Thyroid function tests at six and 12 months (TSH).
- If a heart condition is identified, monitor for signs and symptoms of congestive heart failure, subacute bacterial endocarditis prophylaxis (SBE), as indicated.
- Well child care: immunizations including influenza.
- Newborn hearing screen follow-up and assessment by three months. Audiology evaluation at six months and every six months until “ear specific testing is accomplished and normal,” at which point hearing screens can be done on an annual basis. Review signs and symptoms for obstructive sleep apnea.
- Discuss Early Intervention, including speech therapy, and refer for enrollment in local program, if not done already. Apply for Supplemental Security Income (SSI), depending on family income.
- Consider estate planning and custody arrangements; continue family support.
- Discuss complementary and alternative therapies.
- Referral to local Down syndrome parent group or family support and resources, as indicated. Referral to NDSS.