The Healthcare Guidelines from the American Academy of Pediatrics was developed to assist doctors with patients who have Down syndrome but the information it contains is also important for parents. The document on this site is the 2011 updated version which replaces the 1999 version of the document.

You should make a copy of this document and provide it to your child's physician. 

The full pdf version of the document can be found here.  Below is a summary of the information that the document contains.

 


 

Infancy (Birth to 1 year)

  • Perform complete physical and neurological exam to detect congenital anomalies
  • Perform chromosome analysis (karyotype)
  • Provide genetic counseling, including a discussion of recurrence risk
  • Screen for thyroid dysfunction (sensitive TSH) at 6 months and 1 year
  • Assess cardiac function (echocardigram)
  • Screen for hematologic cancers (CBC)
  • Screen hearing at birth (otoacoustic emission (OAE) or brainstem auditory evoked response (BAER))
  • Check eyes for strabismus, cataracts and nystagmus by 6 months (clinical examination by primary care provider, or refer to ophthalmologist)
  • Refer to an oral health professional for evaluation and recommend an oral health assessment by age 1
  • Schedule routine immunizations, including those for hepatitis B, influenza, and pneumococcal disease
  • Refer to early intervention programs and Down syndrome/disability support groups
  • Discuss possibility of SSI enrollment

 

Early Childhood (1 to 5 years)

  • Screen for thyroid dysfunction (sensitive TSH) annually
  • Assess hearing annually
  • Assess vision annually
  • Reassess cardiac function annually
  • Recommend well-balanced, high fiber diet
  • Recommend the establishment of an oral health care plan, including the engagement of caregivers in daily disease prevention practices as needed.
  • Recommend and arrange for annual dental care exams and cleanings and caries risk assessment as needed (note: children with congenital heart disease should receive antimicrobial prophylaxis before dental procedures)
  • Monitor school placement
  • Monitor speech and language progress
  • Help establish play program for socialization and exercise

 

Late Childhood (5 to 13 years)

  • Screen for thyroid dysfunction (sensitive TSH) annually
  • Reassess vision annually
  • Reassess hearing annually
  • Monitor height and weight, discuss obesity risk
  • Assess self-care skills
  • Obtain lateral x-ray of neck in flexion and extension to rule out atlanto-axial instability
  • Monitor weight and height
  • Monitor school progress
  • Monitor speech and language progress
  • Monitor oral health status, caries risk, and nutrition
  • Encourage active play and regular exercise and participation in sports

 

Adolescence (13-18 years)

  • Screen for thyroid dysfunction (sensitive TSH) annually
  • Reassess vision every 2 years
  • Reassess hearing every 2 years
  • Watch for signs of atlanto-axial instability
  • Discuss sexuality and socialization
  • Recommend regular exercise and nutrition counseling
  • Monitor oral health status and caries risk
  • Monitor height and weight
  • Reinforce importance of self-care skills
  • Discuss long-term financial plans
  • Discuss alternative community living resources
  • Monitor prevocational training
  • Discuss community-supported employment opportunities

 

Adulthood (18 years and over)

  • Screen for thyroid dysfunction (sensitive TSH) annually
  • Reassess vision every 2 years
  • Reassess hearing every 2 years
  • Recommend regular exercise and nutritional counseling
  • Monitor weight
  • Monitor for behavioral changes/loss of skills
  • Monitor for mental health problems
  • Monitor oral health status and caries risk
  • Monitor for symptoms of dementia, including Alzheimer's disease
  • Monitor vocational activities