Doctors change young boy’s life after misdiagnosis
He was diagnosed with epilepsy as a baby, and one side of his body regularly became paralysed for up to five days.
Eventually, his preschool said it couldn’t cope with his “uncontrolled epilepsy” and asked his mother to remove him.
Desperate for help, the mother took the five-year-old to the paediatric neurology clinic at Frere Hospital in East London . . . and everything changed.
Doctors realised the little boy had been misdiagnosed.
Instead of epilepsy, he had alternating hemiplegia of childhood, a neurodevelopmental disorder that affects only one person in a million.
“The child would have unprovoked, sudden-onset paralysis of one side of the body,” they said. “These episodes would last from a few hours to up to five days, and would then resolve completely with no residual effects.
“The frequency of the episodes was unpredictable, ranging from several times a week to only once a month. Occasionally both sides of the body would be involved.
“Notably, the mother revealed that the paralysis would resolve if the child went to sleep during these episodes, and would return 15 to 20 minutes after waking.”
After being taken off his epilepsy medication and treated with a cheap generic drug normally used to prevent migraines, the boy has made a dramatic improvement.
Reporting the case in the March edition of the SA Medical Journal, Frere doctors Ludo van Hillegondsberg and IA Michaelis said that over seven months there was a marked reduction in the boy’s episodes of hemiplegia. “Episodes only occurred about once a month, the extent of the paralysis with each episode was less severe, and symptoms would always resolve in less than 24 hours,” they said.
“Owing to the improved control of his episodes he was able to enrol successfully in a special needs school.”
In what is believed to be the first published case report in SA on alternating hemiplegia of childhood, Van Hillegondsberg and Michaelis said the disease was caused by a genetic mutation and was difficult to manage and treat. The usual calcium-channel blocker was not available in SA, so they decided to try a similar widely available drug, verapamil.
“The marked reduction in episode frequency, severity and duration [and] a six-month period free of debilitating episodes . . . suggest that verapamil could be a viable alternative in treating alternating hemiplegia of childhood in the SA setting,” they said.
He was able to enrol successfully in a special needs school
Ludo van Hillegondsberg Frere doctor reporting in the SA Medical Journal