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Background  The Human Immune Deficiency Virus (HIV) can manifest neurologically in both adults and children. Early invasion of the central nervous system by the virus, affecting the developing brain, is believed to result in the most common primary HIV-related neurological complication, HIV Encephalopathy (HIVE). In countries such as South Africa where many children have not been initiated on antiretroviral treatment early, HIVE remains a significant clinical problem.    Methods  Children were selected from a clinic for children with neurologic complications of HIV, located at the Red Cross War Memorial Children’s Hospital, South Africa 2008–2012. Eligible subjects fulfilled the following inclusion criteria: aged 6 months-13 years; positive diagnosis of HIV infection, vertically infected and HIVE as defined by CDC criteria. Each participant was prospectively assessed by a Pediatric Neurologist using a standardized proforma which collated relevant details of background, clinical and immunological status.    Results   The median age of the 87 children was 64 months (interquartile range 27–95 months). All except one child were on antiretroviral treatment, 45% had commenced treatment <12 months of age. Delayed early motor milestones were reported in 80% and delayed early speech in 75% of children in whom we had the information. Twenty percent had a history of one or more seizures and 41% had a history of behavior problems. Forty-eight percent had microcephaly and 63% a spastic diplegia. CD4 percentages followed a normal distribution with mean of 30.3% (SD 8.69). Viral loads were undetectable (<log 1.6) in 70% of the children. Brain imaging was performed on 56% with 71% of those imaged demonstrating at least one abnormality, most commonly white matter volume loss or signal abnormality.Conclusions  Amongst the cohort of children referred to this clinic, the diagnosis of HIVE was unrecognized in the general medical services, even in its most severe form. Developmental delay and school failure were major presenting problems. Co-morbidities are a frequent finding and should be sought actively in order to optimize management and promote best possible outcomes for this vulnerable group of children.

HIV Encephalopathy: pediatric case series description and insights from the clinic coalface