Table 5.

Treatment of Manifestations in Individuals with Tatton-Brown-Rahman Syndrome

Manifestation/ConcernTreatmentConsiderations/Other
Obesity Referral to dietician & accompanying lifestyle advice recommended
Developmental delay /
Intellectual disability 		See Developmental Delay / Intellectual Disability Management Issues.
Behavioral/
psychiatric diagnoses 		Standard treatment per psychologist/psychiatrist
Epilepsy Standardized treatment w/ASM by experienced neurologist
  • Many ASMs may be effective; none has been demonstrated effective specifically for TBRS.
  • Education of parents/caregivers 1
Joint hypermobility Standard treatment incl PT &/or OT
Kyphoscoliosis Standard treatment per orthopedist
Congenital heart defects /
Aortic dilatation 		Standard treatment per cardiologist
Sleep apnea Standard treatment per otolaryngologist &/or sleep medicine specialist
Cryptorchidism Standard treatment per urologist
Acute leukemia Standard treatment per hematologist/oncologist
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; 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.

From: Tatton-Brown-Rahman Syndrome

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