Table 10.

Recommended Surveillance for Individuals with Alexander Disease

System/ConcernEvaluationFrequency
Growth
parameters 		Height, weight, head circumference, heart rate, vital signsEvery 6 mos
Neurology Neurologic examEvery 3-6 mos (Younger persons & those early in disease course may require more frequent assessment.)
Development Monitor developmental progress & educational needs.At each visit
PT/OT Gross & fine motor rating scalesPer therapist
Swallow eval Clinical or radiologic evalAnnually 1
Speech/
Language 		Expressive & receptive language skillsPer therapist
Gastrointestinal History & eval of GI tract for esophageal dysfunction, reflux, vomiting, & constipationAnnually 1
Orthopedics Clinical or radiographic assessment for scoliosis
Orthostatic
vitals 		Measurement of heart rate & blood pressure while lying, sitting, & standing
Psychiatry/
Psychology 		Discussion of impact of diagnosis on patient's physical & mental health
Pulmonary Assessment of respiratory function
Sleep medicine Discussion about sleep apnea & sleep study, if indicated
Urology Review of urinary tract symptoms & bladder scan or other testing, if indicated

GI = gastrointestinal; OT = occupational therapy; PT = physical therapy

1.

Active issues may require more frequent evaluations

From: Alexander Disease

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