Table 4.

Treatment of Manifestations in Individuals with White-Sutton Syndrome

Manifestation/
Concern		TreatmentConsiderations/Other
DD/ID See Developmental Delay / Intellectual Disability Management Issues.
Hypotonia,
spasticity, &
gait problems
  • PT/OT for muscle strengthening, stretching to help avoid contractures & falls
  • Orthopedics / physical medicine & rehab as needed
Consider need for positioning & mobility devices, disability parking placard.
Behavioral
problems 		Behavioral & psychiatric treatment(s) as needed per psychotherapist/psychiatrist for aggressive behavior, extreme withdrawal, or anxietyPsychiatric eval & follow up as needed
Epilepsy Standardized treatment w/ASM by experienced neurologist
  • Many ASMs may be effective; none has been demonstrated effective specifically for this disorder.
  • Education of parents/caregivers 1
Ophthalmologic
involvement 		Standardized treatment per ophthalmologistCommunity vision services through early intervention or school district
Hearing Hearing aids may be helpful; per otolaryngologist.Community hearing services through early intervention or school district
Sleep
disorders 		Individualized treatment depending on disorder
  • Melatonin has improved quality of sleep in some persons. 2
  • Standardized treatment for obstructive sleep apnea
Vomiting Standardized treatment for gastroesophageal reflux & cyclic vomiting
Bowel
dysfunction 		Standardized treatment for constipationStool softeners, prokinetics, osmotic agents, or laxatives as needed
Poor weight
gain / FTT
  • 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
Family/
Community
  • Ensure appropriate social work involvement to connect families w/local resources, respite, & support.
  • Coordinate care to manage multiple subspecialty appointments, equipment, medications, & supplies.
  • Ongoing assessment of need for palliative care involvement &/or home nursing
  • Consider involvement in adaptive sports or Special Olympics.

ASM = anti-seizure medication; DD = developmental delay; FTT = failure to thrive; ID = intellectual disability; OT = occupational therapy; PT = physical therapy

1.

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.

2.

From: White-Sutton Syndrome

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