Devastating Consequences of Missed Pediatric Stroke: Laney's Story

By Will Boggs MD

March 13, 2019

NEW YORK (Reuters Health) - Laney was a 4-year-old girl who died after a much delayed diagnosis of stroke, and her parents hope her story might save another child's life.

"Unfortunately, Laney's case is not an exception," Dr. Lisa R. Sun from Johns Hopkins University School of Medicine in Baltimore told Reuters Health by email. "Multiple studies have shown that the time from symptom onset to diagnosis in childhood stroke is between 22 and 25 hours on average. This magnitude of diagnostic delay puts children well out of the time window for acute stroke therapies that have shown immense benefit in adults and it delays neuroprotective measures and early rehabilitation."

In Laney's case, symptoms began as a brief episode of slurred speech, followed two weeks later by slurred speech and a facial droop. A week later, a neurologist diagnosed her with complex partial seizures based on a video and description of her symptoms.

One month after her initial symptoms, Laney woke up unable to stand, speak, eat, or drink, and only then did she undergo an MRI. The doctors informed her parents that Laney had suffered multiple acute strokes and had severe brain damage. This was the first time they had heard the word "stroke" since her symptoms began, Dr. Sun and her colleagues report in Pediatrics, online March 12.

Laney continued to have strokes over the next several months as a result of what was diagnosed as moyamoya disease, a cerebral vasculopathy that proved relentless in her case. Seven months after her original symptoms, Laney suffered another stroke from which she never recovered. She died three months later.

Dr. Sun and the family testified as a united team to the Maryland House of Delegates and Senate, along with others affected by pediatric stroke, in support of a proposed bill that would mandate education about pediatric stroke. Laney's parents established the Laney Jaymes Foundation (http://www.laneyjaymes.org/) in 2017 with the missions of expanding pediatric-stroke awareness, supporting research, and providing adaptive equipment to children who have suffered from stroke.

"Medical professionals need to be aware that children can have strokes," Dr. Sun said. "Though strokes may appear different in very young patients, they often look the same as adult strokes, with hemiparesis, facial droop, and speech changes being common signs of pediatric stroke. Younger children are more likely to have a first-time focal seizure as a first presentation of their stroke."

"Because of the time-dependence of pediatric stroke, we also need to educate the public that children can have strokes so that they do not delay medical evaluation," she said. "For these reasons, we continue our efforts to pass legislation and other policies that increase education about pediatric stroke to those people who frequently encounter sick children, such as school nurses, EMS personnel, and pediatric medical providers."

"If one - just one - person had recognized Laney's symptoms as TIAs during her terrifying and tragic first month of symptoms, she could have received earlier treatment that may have prevented her devastating strokes," Dr. Sun said. "Earlier recognition may have abated the horror and panic her family experienced while awaiting a diagnosis. I hope we have empowered anyone who interacts with children to recognize that strokes can happen in children and to call 911 if they suspect a stroke."

SOURCE: https://bit.ly/2J8dRUH

Pediatrics 2019.

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