Part I: Clinical Practice Guidelines With Down Syndrome From Birth to 12 Years

Susan N. Van Cleve, MSN, RN, CPNP; William I. Cohen, MD


J Pediatr Health Care. 2006;20(1):47-54. 

In This Article

1 Month to 12 Months

  • Infants should receive all recommended vaccines.

  • Palivizumab (Synagis) is a monoclonal antibody directed specifically against respiratory syncytial virus and is indicated for infants who meet the recommended criteria (Committee on Infectious Diseases and Committee on Fetus and Newborns, AAP, 2003). Most infants up to 24 months with DS will benefit from palivizumab injections monthly during respiratory syncytial virus season because of cardiac disease or anatomic differences in the upper airway that predispose them to respiratory complications.

When infants are seen for their routine health supervision visits, the following should be included in addition to routine pediatric care:


  • Review parental concerns.

  • Review records for hearing evaluation, cardiac status (echocardiogram), and newborn screening, specifically thyroid testing, all of which should have been done at birth.

  • Obtain an in-depth history regarding URIs and otitis media.

  • Diet history and elimination pattern should be assessed thoroughly. Aggressive treatment of constipation should be instituted, and if the child is not responsive to dietary management, consider referral.

  • Obtain a history regarding the infant's hearing and vision.

  • Review early intervention services to ensure that the child is receiving optimal developmental stimulation.


Physical Examination

  • Growth parameters should be performed as described previously.

  • A general neurologic, neuromotor, and musculoskeletal examination should be performed with every routine visit.

  • Infants with DS frequently have narrow ear canals; visualization of tympanic membranes is difficult. Refer to an otolaryngologist if the infant has ear canals so narrow that the tympanic membranes cannot be visualized, or if the infant has occlusion of ear canals with cerumen, recurrent otitis media, or recurrent URIs.

  • Hearing should be formally re-evaluated between 9 to 12 months with a behavioral audiogram.

  • Infants should be evaluated by a pediatric ophthalmologist or an ophthalmologist with a specialty in disabilities by 6 months of age.

  • Thyroid function (free T4 and thyroid stimulating hormone [TSH]) should be rechecked by 6 months of age and again at 1 year of age.

  • Continue SBE prophylaxis for children with cardiac defects.

Anticipatory Guidance

  • Review the infant's growth and development. Discuss that infants with DS may have developmental delays, including delays in motor skill (sitting and crawling, pincer grasp) as well as delays in speech and language.

  • Refer to the local DS Center ( Box 1 ). Review family supports and local DS resources.

  • Refer for early intervention services (if not done earlier).

  • Review the infant's susceptibility to URIs and when parents should be concerned about an infant's breathing.

  • Continue SBE prophylaxis in children where indicated.

  • Infants with DS often will experience constipation when solid foods are introduced. Define constipation and encourage parents to contact the clinician if constipation develops.

  • The infant may be eligible for Social Security Income, depending on family income. In some states, children with DS are eligible for Medical Assistance in addition to private insurance. Consider estate planning and custody arrangements.


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