Table 5.

Recommended Surveillance for Individuals with Xia-Gibbs Syndrome

System/ConcernEvaluationFrequency
Constitutional Measurement of growth parametersAt each visit
Development Monitor developmental progress & educational needs.
Psychiatric/
Behavioral 		Behavioral assessment for anxiety, attention, & aggressive or self-injurious behavior
Neurologic Monitor those w/seizures.
Assess for new manifestations, e.g., seizures, changes in tone, mvmt disorders.
Feeding
  • Eval of nutritional status & safety of oral intake
  • Assess for signs & symptoms of GERD
Respiratory Monitor for signs & symptoms of respiratory insufficiency & sleep apnea.
Endocrine Measurement of growth hormone levelIn those w/poor growth velocity
Musculoskeletal Clinical assessment for scoliosisAt each visit in childhood until skeletal maturity
Eyes Ophthalmology evalAnnually or as clinically indicated
Hearing Audiology evalAnnually in childhood or as clinically indicated
Family/
Community 		Assess family need for social work support (e.g., palliative/respite care, home nursing, other local resources) & care coordination.At each visit

GERD = gastroesophageal reflux disease

From: Xia-Gibbs Syndrome

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