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Tuesday, January 19, 2010

Children Don’t Have Strokes? Just Ask Jared

Alex di Suvero for The New York Times
EMERGENCY Jared Dienst had walked to a park with his mother after school let out one day in June 2008 when he complained of a headache. He soon began to stumble, and his speech was slurred.

Published: January 18, 2010
My son Jared lay in a bed at NewYork-Presbyterian/Weill Cornell hospital, limp and pale, his 7-year-old body tethered to a tangle of tubes and monitor wires.

A neurologist, Dr. Maurine Packard, stood to his left. “Jared,” I recall her saying. “Pay attention to what I say.” And then, in a strong, firm voice: “The barn is red.”
She waited a few moments and asked, “What color is the barn?”
Jared started to answer, then froze. My wife and I, sitting behind Dr. Packard, froze too. Two days before, he had been a happy, athletic second grader, a beautiful boy who loved playing baseball and basketball in the park. Now he couldn’t walk; he had to struggle to remember the color of a barn.
He tried again, and then replied in a weak, slurred voice.
“No,” Jared said. Dr. Packard nodded, as if that was the answer she had expected.
Before June 23, 2008, my wife, Victoria, and I had never heard of a child’s having a stroke. Most people, many doctors included, still haven’t. In the agonizing months that followed, we heard it over and over: “But children don’t have strokes.”
How little we knew. It turns out that stroke, by some estimates, is the sixth leading cause of death in infants and children. And experts say doctors and hospitals need to be far more aggressive in detecting and treating it.
Dr. Rebecca N. Ichord, director of the pediatric stroke program at Children’s Hospital of Philadelphia, who continues to be deeply involved in Jared’s care, said that while conditions like migraines and poisoning could cause similar symptoms, “front-line providers need to have stroke on their radar screen as a possible cause of sudden neurologic illness in children.”
Dr. Heather J. Fullerton, a leading pediatric stroke researcher at the University of California, San Francisco, was even more emphatic. “When a child comes into an emergency room with strokelike symptoms,” Dr. Fullerton said, “it should be considered a stroke unless proven otherwise.”
MONDAY, JUNE 23, 2008, 3:30 P.M. The afternoon was glorious — warm, sunny and breezy. Victoria picked up Jared at P.S. 183 on the Upper East Side of Manhattan and walked with him to the nearby St. Catherine’s Park.
Suddenly, she saw him sit down, holding his head. She ran across the playground to find him dazed. “Mom,” he said. “My head hurts.”
Her first thought was dehydration. She gave him some water. After a minute, she asked him if he wanted to try to stand.
Jared rose but quickly began to stumble in an almost drunken zigzag. His left leg did not seem to be working. His words remained slurred, his gaze vacant. Then his eyes rolled up in his head.
Victoria scooped him up and ran one block east, to Weill Cornell. “Stay awake, baby,” she kept telling him. “Just stay awake.”
Slurred speech, droopy left eye, stiffness, a sudden inability to walk or even stand on his own: if an adult had come into an emergency room with similar symptoms, the staff might have quickly picked up these classic signs of stroke. But this patient was 7.
“Did your son eat any poison? Does he suffer from seizures?” my wife remembers being asked. She shook her head no. She called me at my office. “Something’s very wrong with Jared.”
In the cab to the hospital that afternoon, I did not know what to think. I certainly was not prepared for what was to come.
Jared would face months of treatment and rehabilitation. The stroke would take an emotional toll on our family, including Jared’s twin sister, Nicole, and younger brother, Teddy. Vicki and I would soon seek out top specialists at hospitals across five states. Yet we would never get a definitive answer as to what caused our child’s stroke.
MONDAY, 5 P.M. When I arrived, the pediatric emergency room was very busy. Jared was lying on a stretcher in a hallway. The attending doctor came over and asked him if he wanted to try to walk. The doctor helped him down, and Jared wobbled a few steps. He looked so awkward that I almost thought he was kidding around. The doctor grabbed him and had him lie back down. A CT scan was ordered.
I went outside and called Jared’s pediatrician and my own physician. Listening to my description, they speculated that Jared had suffered a seizure and that the symptoms might go away over time.
I went back inside. We took Jared for the scan. After a bit of a wait, we were told the results were normal.
While Jared seemed stable, his condition had not improved. The attending doctor suggested we give it a little more time. But by now it had been nearly four hours since he collapsed. What if he got worse? We were told a call had been made to the neurology department.
I stepped outside and called the department myself, saying it was an emergency. Dr. Packard quickly called back, and after a short discussion she said she would ask the E.R. doctors to send Jared for an M.R.I.
Within minutes, a neurology fellow arrived. Jared was asked to try to touch the tip of his nose with his right pointer. He missed, touching his left cheek instead. When asked to try the same motion with his left hand, he could barely raise it.
Jared was wheeled down hallways and into an elevator. I was told to wait outside the imaging room. All I could think was how terrifying it must be for my son, all alone, to be eased into that loud, white, tubular machine. The scans took 45 minutes. When it was over, the technicians told me Jared had done great, that he had actually fallen asleep for most of the test.

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