Without current curative treatment available, management is symptomatic.
Special attention should be given to:

  • Growth and feeding: Nutritional support for feeding difficulties and management by a cleft/craniofacial team for those with palatal anomalies early in life
  • Early referral for developmental support/special education
  • Early recognition of behavioral problems and sleep disturbance
  • Standard treatment for dental anomalies
  • Low bone density with associated fractures can need medications such as bisphosphonates. Baseline bone density scan and vitamin D level measuring after 4 years of age is recommended
  • Increased risk for seizure disorders. A baseline overnight electroencephalogram could be informative
  • Baseline ophthalmology exam