Back in the Game – Neurology
December 22, 2008
Jordan, the boy who loved football more than food, was losing control.
It started right after Valentine’s Day 2007 during a family snowboarding trip when his face began twisting into weird grimaces. His hand refused to move his pencil properly so his A+ schoolwork slid downhill. At age 8, his body was going on strike.
A specialist diagnosed Sydenham’s Chorea, a rare neurological disorder affecting mostly children. There is no simple cure, doctors told parents Jarrod and Danielle of Lakeside, but with the right medication and monitoring, the disease can be managed and most kids make a full recovery within months.
But happily ever after is not what happened next.
Jordan kept losing more and more control. By March, he couldn’t feed himself anymore.
“It was frustrating because you always wanted something and you couldn’t get it,” recalls Jordan. His thumbs became blistered because for months the only way he could communicate was thumbs up for yes, thumbs down for no.
“The doctors said it was a 1-in-a-million case,” recalls Danielle, “That he may never be the same again.”
But the boy refused to accept that any football season would pass without him suited up and running for the end zone.
His neurologist, Dr. Michelle Sahagian, was touched at how Jordan was never without his football or his shy grin.
Jordan suffered from what for centuries has been called St. Vitus Dance, its name taken from the way victims move in wild jerking motion, in the manner of the desperate dancing of the ancients appealing to the Roman Catholic saint to cure them.
By March 2007, Sahagian knew she was looking at a very serious case of a disease virtually unknown on the West Coast. She immediately admitted him into Rady Children’s Hospital-San Diego, news that brought tears from his mother – of both fear and relief.
For Danielle was struggling trying to care for an invalid who was not getting better, at the same time maintain some normalcy for his baby sister Jalynne and big brother, Jarred. “It was hard,” she recalls, “But I knew that in the hospital he would get better.”
Sydenham’s Chorea, named for the 17th century doctor who studied the disorder, develops from an untreated strain of strep throat that can develop into acute rheumatic fever months after infection. It’s been almost wiped out by antibiotic treatment of strep throat in developed nations, and the U.S. sees less than 300 cases per year, according to Dr. Susan Swedo, a leading expert at the National Institute of Mental Health. Since Jordan suffers from asthma, his medication may have disguised the symptoms. Many victims don’t remember even having strep, said Swedo, “It’s sneaky that way.”
Once hospitalized, Jordan responded slowly to medication but quickly to his nurses, who fussed over him and decorated his room like a jungle complete with a snake. On the snake’s head his dad pinned his football button – so the boy could literally keep his eye on the ball.
For one month and one week in the hospital he couldn’t eat or drink, for his jerking movements were still severe enough to pose a choking hazard. Likewise, the normally well-turned-out youth couldn’t get his thick black hair cut, scissors being too risky.
Danielle took to gelling his hair in crazy directions to make him laugh. She and Jarrod kept a perpetual bedside vigil and a steady stream of family and friends as well as his teacher came visiting. Plus hundreds of strangers from a dozen church congregations offered Jordan their prayers. It was the combination of overwhelming love, top-notch medical care and strong faith, the Turners believe, that ultimately healed their boy enough to get back in the game.
By Easter, he had relearned how to walk, talk and especially eat. “He went from this picky kid, to eating everything,” his mother laughs. Except for his appetite, she says he’s the same kid tearing around on his bike through the canyons and hillsides out his backdoor, prowling the brush watching his adored reptiles and hunting for crystals and interesting rocks.
For Jordan, the best medicine was San Diego Chargers, recruited for a special visit by a Rady Children’s Foundation employee who heard of the boy’s illness. In what seemed like a little boy’s dream come true, punter Mike Scifres and defensive end Jacques Cesaire came bearing autographed footballs, jerseys and posters from all his hometown heroes.
His dad, a builder who helped build their custom home on the Barona Reservation, painted Jordan’s room Charger Blue to better display his prizes.
Physically he walked away from a potentially life-altering disease but he gets daily reminders of what might have been – and what could still strike back. Every day the 9-year-old must take penicillin to protect him against a new bout of strep throat and protect his heart rheumatic fever, medication he’ll need until reaches his early 20s – and maybe even beyond that.
Rady Children’s doctors found damage to his heart valve, which places him at a major risk for a relapse. “In someone with a little bit of damage in his heart valve, the body would react again 100-times worse and destroy the valve if he became sick again,” said Dr. John Bradley, director of Rady Children’s Infectious Disease Division.
Danielle believes it’s useless to treat her middle son like he was made of glass, she says. “What good would it do to keep him away from everything he loves? Worrying about it won’t make things different.”
Her instinct was confirmed when she saw what it meant for her son when he returned home by the end of Little League season, and won a tearful ovation from the crowd when he rose from his wheelchair to pitch an inning. By mid-summer, he was strong enough to suit up in time to play tackle football. He had a great season.
Originally published in Kids’ NewsDay, San Diego Union-Tribune,
October 7, 2008