Table 5.

Recommended Surveillance for Individuals with DDON Syndrome

System/ConcernEvaluationFrequency
Hearing impairment Audiologic evalAnnually
Speech & language development By speech & language therapist
Dystonia Neurologic exam to monitor progression of dystonia & review medicationsRegular follow up depending on rate of progression
PT/OT: review activities of daily living, gross motor & fine motor needs
Vision impairment Visual acuity
Psychiatric/
Behavioral 		When clinically relevantIndividual follow up based on clinical findings
Developmental
progress &
educational needs
  • Effect of hearing impairment, vision impairment, mvmt disorder, changes in behavior &/or cognitive abilities when clinically relevant
  • Be aware of signs of dementia in adults.
Individual program for follow up
Family/caregiver
needs 		Assess need for social work support (e.g., respite care, home nursing, other local resources) & care coordination.At each visit

OT = occupational therapy; PT = physical therapy

From: Deafness-Dystonia-Optic Neuronopathy Syndrome

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