Christopher Sepúlveda Overcomes Rare Childhood Epilepsy Diagnosis

When Christopher Sepúlveda was two years old, his parents noticed involuntary movements in his mouth and eyes, alongside episodes where he would freeze and remain motionless for nearly two minutes.

A Long Search for Answers

Over months of searching for answers and cycling through ineffective medications, Christopher’s condition worsened to the point where he stopped walking, talking, and reaching developmental milestones.

Diagnosis at Johns Hopkins

The family was eventually referred to the Johns Hopkins Children’s Center in Baltimore, where they met Sarah Aminoff Kelley, a pediatric neurologist and director of the pediatric epilepsy monitoring unit. Kelley and her team performed an electroencephalogram, a test measuring electrical activity in the brain, and called Christopher’s parents the next day with a diagnosis of developmental and epileptic encephalopathy with spike wave activation in sleep, known as DEE-SWAS.

Christopher Sepúlveda Overcomes Rare Childhood Epilepsy Diagnosis

Childhood Epilepsy Disrupts Cognitive Development

DEE-SWAS is a rare and potentially serious form of childhood epilepsy that generates abnormal electrical activity in the brain, intensifying during sleep to disrupt normal cognitive functioning and neurological development. These seizures can trigger regression in speaking, learning, memory, and cognitive skills while robbing children of the restorative sleep required for memory consolidation.

A Formidable Path Forward

Kelley and her team immediately built a treatment plan, though Christopher still faced a formidable path forward. Several medications provided only temporary relief early in his care, and he suffered a severe seizure during which he turned purple and stopped responding, leading to a stay in the pediatric intensive care unit.

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“Dr. Kelley took all of our concerns seriously,” Roberto Sepúlveda, Christopher’s father, told News-Medical. “If one medicine didn’t work, she worked on a new plan for our son. She never stopped looking for answers.”

High-Dose Diazepam Aids Seizure Recovery

Alongside various epilepsy medications, clinicians placed Christopher on a high dose of diazepam. His seizures gradually subsided, marking a major turning point in his recovery. Now 15 years old and thriving, Christopher has been free of seizures for years and has not required any epilepsy medication since 2019.

Despite experiencing early developmental delays, he is walking, talking, riding a bike, and excelling in school, with plans to begin swimming lessons to build his physical strength. His recovery coincides with November’s designation as Epilepsy Awareness Month, serving to highlight the realities faced by those living with complex neurological disorders.

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