| 75 |
2013 |
Pyomyositis in Nodding syndrome (NS) patient--a case report |
Uganda |
N/A |
Case report |
1 |
- |
Pyomyostitis in a probable NS case. Seizures treated with sodium valproate. |
The Pan African Medical Journal |
| 52 |
2013 |
Neuropsychiatric perspectives on nodding syndrome in northern Uganda: a case series study and a review of the literature |
Uganda |
N/A |
Case series |
6 |
- |
NS patients may have histories of psychological trauma, and comorbidities including PTSD, DTD and depression. Treatments included CBZ or PHB and sometimes imipramine, with mixed results. |
African Health Sciences |
| 15 |
2014 |
Patients with nodding syndrome in Uganda improve with symptomatic treatment: a cross-sectional study |
Uganda |
2013 |
Cohort |
484 |
476 |
Controls were patients with OCE. Treatment according to the 2013 guidelines resulted in 25% of NS patients being seizure free. >70% had a reduced seizure frequency. Emotional and behavioural difficulties resolved in 59%. 86/484 children who had not previously been able to attend school could now do so. 83.1% achieved independence in basic self-care. |
BMJ Open |
| 76 |
2014 |
A longitudinal study on nodding syndrome--a new African epilepsy disorder |
Tanzania |
2009 |
Cohort |
62 |
- |
Longitudinal follow-up study on Winkler and colleagues 2008. HN decreased in 11, increased in 2, did not change in 4 and stopped in 15 of 32 patients treated with PHB. Of the 15, 13 still had GTCS. HN stopped in 3 patients treated with CBZ, all continued to have GTCS. |
Epilepsia |
| 78 |
2015 |
Catatonia in Ugandan children with nodding syndrome and effects of treatment with lorazepam: a pilot study |
Uganda |
N/A |
Cross-sectional |
33 |
- |
16/33 patients met diagnostic criteria for catatonia. Lorazepam administration reduced the severity of catatonia symptoms in 10 of 16 patients, and by more than 50% in 6. |
BMC Research Notes |
| 48 |
2015 |
Evaluation and immunomodulatory treatment at the NIH of children with nodding syndrome from northern Uganda |
USA |
N/A |
Case series |
3 |
- |
Abstract only available. 3 related NS patients were examined. CSF from 1/3 had oligoclonal bands, another had partially identical bands in CSF and serum. Biomarkers for pyridoxine-responsive seizures were absent in all. Mt DNA was normal. 2/3 were given plasmapheresis, 1/3 was given IVIG, all were given pyridoxine. No HN episodes recorded, 1/3 had multiple seizures. |
Neurology |
| 77 |
2015 |
Neurophysiological and clinical findings on nodding syndrome in 21 South Sudanese children and a review of the literature |
South Sudan |
2012-13 |
Case series |
21 |
- |
18 probable cases, 3 confirmed. Clincial and EEG findings described. None achieved good seizure control with CBZ monotherapy (n=9) or in combination with PHB (n=9) or PHT (n=3). |
Seizure-European Journal of Epilepsy |
| 11 |
2015 |
Case report: nodding syndrome, Western Uganda, 1994 |
Uganda |
1994 |
Case report |
1 |
- |
Description of NS in a 15-year-old male from an OV endemic area in an area of Western Uganda not previously associated with NS. Treatment with PHB did not achieve long-term seizure control. |
American Journal of Tropical Medicine and Hygiene |
| 72 |
2016 |
Health seeking behaviours among caretakers of children with nodding syndrome in Pader District - Northern Uganda: a mixed methods study |
Uganda |
2013 |
Cross-sectional |
249 caregivers |
- |
78.3% of caretakers sought help from a health facility, 50% with a delay of at least one month. 12.9% sought help from traditional healers and 8.8% self-medicated. |
PLoS One |
| 73 |
2016 |
An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda |
Uganda |
N/A |
Qualitative |
54 caregivers |
- |
Caregivers have a high burden of care and associated emotional agony, anxiety for their patient's safety and own risk of burnout, face social isolation and stigmatisation and homicidal and suicidal ideations were recorded. |
BMC Psychiatry |
| 83 |
2017 |
Ivermectin treatment in patients With onchocerciasis-associated epilepsy: protocol of a randomized clinical trial |
Democratic Republic of Congo |
2017-ongoing |
Randomised controlled trial protocol |
N/A |
N/A |
Protocol for a RCT in OV+ epilepsy patients, comparing immediate and delayed (after 4 months) ivermectin treatment. All patients will receive AEDs. |
JMIR research protocols |
| 19 |
2018 |
Treatment and rehabilitation outcomes of children affected with nodding syndrome in Northern Uganda: a descriptive case series |
Uganda |
2012 |
Retrospective |
32 |
- |
13 months of nutritional and multivitamin supplementation reduced the incidences of severe or moderate wasting (9.7% to 2.6% and 19.7% to 2.6% respectively) and severe and moderate stunting (combined 54.8% to 12.8% and 7.7% respectively). AED therapy for 29 cases was detailed, although reduction in seizure frequency not clearly reported. Higher seizure frequency associated with female gender or febrile illness. |
Pan African Medical Journal |
| 82 |
2018 |
Setting up a clinical trial for a novel disease: a case study of the doxycycline for the treatment of nodding syndrome trial - challenges, enablers and lessons learned |
Uganda |
2015 |
Randomised controlled trial protocol |
115 |
115 |
NS patients will be given 6 weeks of doxycycline (100mg/day) or a placebo. Primary outcome: % of patients with anti-LM-1 Ig at 24mo post-treatment. |
RCT protocol (NCT02850913) |