Objectives: Nodding syndrome (NS) is a poorly understood neurologic disorder in Eastern Africa. In Uganda, a symptomatic treatment intervention of sodium valproate for seizures, management of behaviour and emotional difficulties, nutritional and physical rehabilitation was introduced in 2012. We examined the outcomes of this intervention after a minimum 12 months and compared these outcomes to patients with other convulsive epilepsies (OCE).

Methods: The study was conducted from July–September 2013. Clinicians completed case record forms from a review of records, inquiry from carers, and on physical exam. The primary outcome measure was the proportion achieving seizure freedom (≥1 month without seizures). Secondary outcome measures included reduction in seizure burden, resolution of behaviour and emotional difficulties, performance of activities of daily living and return to school.

Results: We assessed 484 patients with NS and 476 with OCE. The intervention resulted in marked improvements in symptoms and function; 121/484(24.7%) of patients with NS became seizure free and there was >70% reduction in seizures; behaviour and emotional difficulties resolved in 194/327(59.3%); 193/484(39.9%) were attending school; 80% had achieved independence in self care and 75% could assist in home care activities. These improvements were however less than that in patients with OCE in who 243/476(51.1%) were seizure free and there was 86% reduction in seizures.

Conclusions: Ugandan patients with NS have improved with symptomatic treatment suggesting that NS may not necessarily be a progressive neurodegenerative disorder. Epileptic seizures may be a major contributor to the cognitive decline in NS.