Table 13.

Recommended Surveillance for Individuals with Late-Onset Sandhoff Disease

System/ConcernEvaluationFrequency
Neurologic Neurology eval for emergence of new neurologic manifestations &/or progression of existing manifestationsEvery 1-3 yrs
Dysarthria
  • By speech-language pathologist
  • Consider eval for alternative means of communication (e.g., AAC).
As needed
Psychiatric issues Assess for psychosis, anxiety, & depression.At each visit
Musculoskeletal
system
  • OT/PT assessment of ADL; need for splinting for contractures/scoliosis
  • Durable medical equipment for mobility
Family support As needed

AAC = augmentative and alternative communication; ADL = activities of daily living; OT = occupational therapy; PT = physical therapy

From: Sandhoff Disease

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