Table 4.

Treatment of Manifestations in Individuals with Aicardi Syndrome

Manifestation/ConcernTreatmentConsiderations/Other
Developmental delay / Intellectual disability See Developmental Delay / Intellectual Disability Management Issues.
Epilepsy Standardized treatment w/ASM by experienced neurologist; recent studies have shown ≤50% ↓ in median number of seizures w/cannabidiol. 1
  • Most persons require multiple medications for mgmt of seizures, & seizure types may change over time, requiring changes in medications.
  • Education of parents/caregivers 2
Poor weight gain /
Failure to thrive 		Feeding therapy; gastrostomy tube placement may be required for persistent feeding issues.Low threshold for clinical feeding eval &/or radiographic swallowing study if clinical signs or symptoms of dysphagia
Mobility / Activities
of daily living 		Orthopedics / physical medicine & rehab / PT & OT incl stretching to help avoid contractures & fallsConsider need for positioning & mobility devices, hygiene, disability parking placard.
Abnormal vision
&/or strabismus 		Standard treatment(s) as recommended by ophthalmologistCommunity vision services through early intervention or school district
Costovertebral abnormalities Per treating orthopedistCan incl musculoskeletal support & treatment for prevention of scoliosis-related complications
Bowel dysfunction Monitor for constipation.Stool softeners, prokinetics, osmotic agents, or laxatives as needed

ASM = anti-seizure medication; OT = occupational therapy; PT = physical therapy

1.
2.

Education of parents/caregivers regarding common seizure presentations is appropriate. For information on non-medical interventions and coping strategies for children diagnosed with epilepsy, see Epilepsy Foundation Toolbox.

From: Aicardi Syndrome

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