Descriptions of the features of NS appear similar between reports (Appendix A). Nodding is frequently described as occurring in response to some stimulus, frequently being the presence of food or exposure to cold (4, 5, 6, 7). The nodding consists of repetitive bobbing or nodding of the head, sometimes associated with loss of muscle tone in the trunk and upper extremities (6, 7). Consciousness may or may not be impaired during the nodding episodes. The syndrome has been described to be progressive, with gradual neurological deterioration and development of additional seizure types, developmental regression, cognitive decline, and sometimes reportedly resulting in serious injuries or death both due to accidental falls into fires or wells during seizure episodes. Treatment with conventional antiepileptic medications has anecdotally been reported to result in some symptomatic improvement of both nodding and other seizure types. Health workers in southern Sudan report that children who start treatment early and on regular basis have seizures less frequently (9).