Table 5. [Recommended Surveillance for Individuals with White-Sutton Syndrome]. - GeneReviews®

System/Concern	Evaluation	Frequency
Development	Monitor developmental progress & educational needs.	At each visit
Psychiatric/ Behavioral	Behavioral assessment for anxiety, attention, & aggressive or self-injurious behavior	At each visit; follow up w/psychiatrist as needed for severe behavioral problems
Neurologic	Monitor those w/seizures.	As clinically indicated
Assess for new manifestations such as seizures or changes in tone.	At each visit
Eyes	For persons w/refractive errors, optic nerve hypoplasia, &/or strabismus: per treating ophthalmologist	As clinically indicated
Hearing	Monitor for hearing loss.
Sleep disorders	Assess for obstructive sleep apnea & difficulty falling asleep & maintaining sleep.
Gastrointestinal	Monitor for constipation & vomiting.	At each visit
Feeding	Measurement of growth parameters Eval of nutritional status & safety of oral intake
Genitourinary	For persons w/renal / urinary tract anomalies: per treating urologist &/or nephrologist	As clinically indicated
Musculoskeletal	Physical medicine, OT/PT assessment of mobility, self-help skills	At each visit
Family/ Community	Assess family need for social work support (e.g., palliative/respite care, home nursing, other local resources) & care coordination.

System/Concern

Evaluation

Frequency

Development

Monitor developmental progress & educational needs.

At each visit

Psychiatric/
Behavioral

Behavioral assessment for anxiety, attention, & aggressive or self-injurious behavior

At each visit; follow up w/psychiatrist as needed for severe behavioral problems

Neurologic

Monitor those w/seizures.

As clinically indicated

Assess for new manifestations such as seizures or changes in tone.

At each visit

Eyes

For persons w/refractive errors, optic nerve hypoplasia, &/or strabismus: per treating ophthalmologist

As clinically indicated

Hearing

Monitor for hearing loss.

Sleep disorders

Assess for obstructive sleep apnea & difficulty falling asleep & maintaining sleep.

Gastrointestinal

Monitor for constipation & vomiting.

At each visit

Feeding

Measurement of growth parameters
Eval of nutritional status & safety of oral intake

Genitourinary

For persons w/renal / urinary tract anomalies: per treating urologist &/or nephrologist

As clinically indicated

Musculoskeletal

Physical medicine, OT/PT assessment of mobility, self-help skills

At each visit

Family/
Community

Assess family need for social work support (e.g., palliative/respite care, home nursing, other local resources) & care coordination.

From: White-Sutton Syndrome

GeneReviews^® [Internet].

Adam MP, Feldman J, Mirzaa GM, et al., editors.

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