Health Care Guidelines for Individuals with Down Syndrome
Readers: These guidelines are taken from Pediatric journals. Take them along to your pediatrician and make sure you ‘walk through’ these guidelines with the doctor.
Neonatal: (Birth – 1 Month)
- Review parental concerns. Chromosomal karyotype; genetic counseling, if not done prenatally.
- Check for signs and symptoms of gastrointestinal tract blockage (e.g., duodenal web, duodenal atresia, or Hirschsprung disease).
- Use typical growth charts from Centers for Disease Control (CDC), available at www.cds.gov/growthcharts . Use weight/height assessment, as well.
- If constipation present, evaluate for limited diet or fluids, hypotonia, hypothyroidism, gastrointestinal malformation, or Hirschsprung disease.
- Radiolographic swallowing assessment if marked low muscle tone, slow feeding, chocking with feeds, recurrent or persistent respiratory symptoms, failure to thrive. Consider feeding referral, if needed.
- Echocardiogram read by a pediatric cardiologist and referral to pediatric cardiology if abnormalities present. Subacute bacterial endocarditis prophylaxis (SBE), in susceptible children with cardiac disease.
- If a heart condition is identified, monitor for signs and symptoms of congenital heart failure.
- Car seat evaluation to evaluate for apnea, low heart rate, or oxygen desaturation prior to discharge from the hospital at birth if child is hypotonic or has had cardiac surgery.
- Complete blood count (CBC) to rule out transient myeloproliferative disorder (TMD) or polycythemia.
- Review feeding history to ensure adequate caloric intake. Children with Down syndrome can usually nurse, and many can breastfeed successfully. Consider lactation consultation.
- Thyroid function tests – check on results of state-mandated screening at birth. Add TSH if the state-mandated screening only included T4.
- Newborn hearing screen – auditory brainstem response (ABR) or otoacoustic emission (OAE) – to assess for hearing loss
- Discuss risk for respiratory infections.
- Discuss complementary and alternative therapies
- Discuss cervical spine positions, especially for anesthesia or surgical or radiologic procedures.
- Review signs and symptoms of myopathy. If myopathic signs exists, obtain neck X-rays (C-spine).
- Eye exam for cataracts
- Discuss value of Early Intervention (infant stimulation) and refer for enrollment in local program.
- Referral to local Down syndrome parent group or family support and resources, as indicated.
Coming Next Issue: Health Care Guidelines for Infants – 1–12 Months
Adapted with permission from the National Down Syndrome Society – ndss.org
This article first appeared in issue #16 of Down Syndrome Amongst Us
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