Clinical, neurological, and electrophysiological features of nodding syndrome in Kitgum, Uganda: an observational case series

Unravelling the mysterious onchocerciasis—nodding syndrome link: new developments and future challenges

“…Some cases having NS-like clinical features have been described in a number of onchocerciasis-endemic African countries (1), however it is in Northern Uganda (2) and Southern Sudan (3) were epidemic proportions have been noted. First described by Louise Jilek-Aall in Tanzania in the 1960s (4), NS core clinical features are the atonic seizures manifesting as repetitive head nodding episodes (5), often occurring in association with taking a meal or by cold weather, and may be trailed or heralded by other seizure types, behavioural difficulties and deteriorating cognitive function (5)(6)(7). In addition, patients may progressively develop other features such as growth decline, delayed sexual development, malnutrition, and psychiatric manifestations such as aggression, catatonia and/or disordered perception (7)(8)(9).…”

“…Whereas an epidemiological association has consistently been demonstrated between infections with the nematode parasite Onchocerca volvulus (OV), transmitted to humans by the black fly (Simulium sp.) (with a higher sero-positivity prevalence seen among NS cases as well as in those from the affected geographical areas) the evidence regarding its contribution as a cause of NS has been inconclusive (2,5,10). This has stemmed from the lack of proof of microfilariae and adult OV worms' capacity to invade the central nervous system, in spite of some reports of cerebral spinal fluid (CSF) infestation by microfilariae (16).…”

“…Notably, studies have shown a lack of evidence of CSF inflammation (5,10) in NS and it seems unrelated to a known viral infectious aetiology (2,5,10). A plausible explanation for a negative CSF inflammation finding however, could be related to the timing in which the children having NS are identified.…”

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“…86 The obvious outward feature of NS, which afflicts children and adolescents, is a paroxysmal bout of forward and downward head movement, the nodding episodes representing epilepsy seizures. 87 Children with NS display varying levels of mental retardation, often alongside notable stunted growth and failure to develop secondary sexual characteristics (hyposexual dwarfism). Affected children are outwardly healthy until the nodding episodes begin, with several dying due to uncontrolled seizures.…”

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“…This condition is characterized by episodes of repetitive nodding (dropping forward of the head) often coupled with seizure-like behaviours (for example, convulsions or staring spells) that occur during attempted feeding 32,33 . Nodding syndrome is also characterized by stunted brain growth, including significant brain atrophy near the hippocampal and glia matter of the brain and significant cerebellar involvement.…”