Proposed guidelines for the management of nodding syndrome

Abstract

Nodding Syndrome is a poorly understood neurologic disorder of unknown aetiology that affects children and adolescents in Africa. Recent studies have suggested that the head nods are due to atonic seizures and Nodding Syndrome may be classified as probably symptomatic generalised epilepsy. As part of the Ugandan Ministry of Health clinical management response, a multidisciplinary team developed a manual to guide the training of health workers with knowledge and skills to manage the patients. In the absence of a known cause, it was decided to offer symptomatic care. The objective is to relieve symptoms, offer primary and secondary prevention for disability and rehabilitation to improve function. Initial management focuses on the most urgent needs of the patient and the immediate family until 'stability' is achieved. The most important needs were considered as seizure control, management of behavioural and psychiatric difficulties, nursing care, nutritional and subsequently, physical and cognitive rehabilitation. This paper summarises the processes by which the proposed guidelines were developed and provides an outline of the specific treatments currently being provided for the patients.

Nodding Syndrome, Western Uganda, 1994

“…24 On the basis of some theoretical considerations, sodium valproate (VPA) was proposed as an AED that might be most appropriate for controlling the presumably myoclonic movements of head nodding seizures. 26 However, only limited data on the use of VPA in NS are available 7,27 and these do not indicate the greater efficacy of VPA over the alternative AEDs already mentioned. In view of the possibly severe adverse effects of VPA, [28][29][30] the high cost and its difficult availability in rural Africa, it might be reconsidered to abide by the general WHO recommendation to use PHB as the first-line drug, 31,32 especially in patients with coexisting head nodding and convulsive seizures.…”

Nodding syndrome since 2012: recent progress, challenges and recommendations for future research

“…Children with NS are often underweight and malnourished, (Idro et al . ) but this could also be a consequence of the condition rather than due to malnutrition.…”

Nodding Syndrome – a critical note and a plea to join forces

“…As the publication of a WHO report and potential management guidelines (WHO ; Idro et al . ), many more scientists have tried to describe or define the disease and to adapt its appearance to regional or local concepts. The resulting ideas and novel descriptions of pathogenic mechanisms give rise to discussions and controversies (van der Waals et al .…”