Qualitative assessment of improvements by parents

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Qualitative assessment of improvements by parents

and carers On an ordinal subjective scale, parents felt that 112/484 (23.1%) patients with nodding syndrome and 253/476 (53.2%) patients with other convulsive epilepsies had improved markedly. Another 325/484 (67.2%) patients with nodding syndrome and 194/476 (40.8%) patients with other convulsive opposite epilepsies had some improvement. The number of patients with nodding syndrome who could participate and help their parents with home care tasks increased from 152/484 (31.4%) to 372/484 (76.9%) with the intervention. Only 47/484 (9.7%) patients with nodding syndrome and 29/476 (6.1%) patients with other convulsive epilepsies had no improvement in symptoms or became worse over the period of intervention. Prognostic factors for seizure freedom While we examined the relationship between gender, age at onset of symptoms, duration of symptoms, baseline seizure frequency, presence of behaviour and emotional difficulties,

whether the child had head nodding only or head nodding plus (other seizures), antiepileptic drug dose and achieving seizure freedom, only a lower number of clusters of head nods prior to the intervention (adjusted OR 0.80 (95% CI 0.72 to 0.88), p<0.001) and response to a lower antiepileptic drug dose (adjusted OR 0.96 (95% CI 0.93 to 0.99), p=0.046) were independently associated with achieving seizure freedom. Discussion Our study aimed to determine the clinical outcomes and the effectiveness of a symptomatic treatment intervention for nodding syndrome. We documented substantial clinical and functional improvements with the intervention.

The findings suggest that nodding syndrome is probably a reversible encephalopathy. The improvements we observed were, however, less than that seen in patients with other convulsive epilepsies, suggesting that epileptic seizures in nodding syndrome may be less anticonvulsant sensitive compared to seizures in the other convulsive epilepsies. Although the proportion of patients with nodding syndrome who achieved seizure freedom was modest, our findings suggest that a treatment package of selected anticonvulsants, psychobehavioural interventions and nutritional and physical rehabilitation can control Anacetrapib seizures, improve function and even reverse some severe functional disability in nodding syndrome. This observation seems to concur with a report from Tanzania in which although seizure freedom was achieved by 2/32 patients treated with phenobarbitone, over 80% had reductions in seizure burden.9 Even though we did not perform specific cognitive testing or brain imaging to objectively document functional and structural improvements with the intervention, comparisons of a preintervention and repeat EEG recordings in three patients with previous recordings demonstrated clear improvements in background EEG and reductions in the previously widespread interictal epileptiform discharges.

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