Thursday, December 28, 2006
Rare and often misdiagnosed, pediatric multiple sclerosis may be on the rise
Stuart Kellogg December 28, 2006
It just doesn’t seem fair, if words like “fair” may ever be used when speaking of illnesses. Multiple sclerosis — a disease in which the body’s immune system attacks its own myelin, a fatty tissue meant to protect the central nervous system — affects twice as many females as males. Symptoms typically manifest in adults between the ages of 20 and 45.
But Bryan Yglesias was 10 when, in August 2005, he was diagnosed with MS. And he was just 5 when he first complained of having “tingly hands.”
“Nothing fits,” his mother said. “The chances of a kid younger than 16 being diagnosed are between 2 percent and 5 percent, and MS is rare in Hispanics.”
Bryan lives in Hesperia with his father, Nick; his mother, Kathy; and his brother, Justin, 15.
Nick works for Hesperia High School’s athletic department; Kathy works in food service for the Hesperia Unified School District. Justin is a sophomore at Hesperia High School.
In February 2005 Bryan was diagnosed (misdiagnosed, Kathy thinks) with Bell’s palsy, a temporary facial paralysis caused by damage to one of the two facial nerves.
Put on steroids, he gained 33 pounds in just six months, going from 107 to 140.
Before becoming sick, Bryan, an avid soccer player, had played all three midfield positions. Now it was hard for him to balance.
“He walked as if he were drunk,” Kathy said. “At first I thought it was because he’d suddenly gotten so much bigger.
“But he also felt weak and couldn’t sign his name.”
Bryan recalled “feeling heavy and tingly on my right side.”
After two spinal taps ruled out Lyme disease, West Nile virus and meningitis, three MRIs of his brain revealed lesions where myelin had been destroyed.
Bryan Yglesias practices along with the rest of his soccer team during a recent practice in Apple Valley. Photos by AARON J. WALKER, Staff Photographer.
Bryan would be hospitalized three times at Loma Linda University Children’s Hospital: in August 2005 and again in January and February of this year.
In March, Bryan’s parents began taking him to the University of California, San Francisco’s Regional brand-new Pediatric Multiple Sclerosis Center.
There he is seen by a doctor, a nurse, two neurologists, a pediatric psychologist and a school psychologist.
The school psychologist, Mary Crittenden, assessed Bryan’s mood, memory and cognitive functions to establish a baseline for charting the progress of his disease.
“Our insurance doesn’t cover his treatment, so UCSF sees us for free,” a grateful Nick said.
Once a week, Bryan is given an injection of Avonex, a medicine designed to keep the body from attacking itself.
For fear of side effects, he started the Avonex on May 25, the last day of school.
“I get the shot at 5 p.m. and by 7 p.m. the side effects — tired, achy, chills — kick in,” Bryan said. “But they’re gone by the next morning.”
If it wasn’t covered by the family’s HMO, Bryan’s medication would cost them $1,600 a month for four injections.
Of the four forms of MS — relapsing-remitting, primary-progressive, secondary-progressive and progressive-relapsing — Bryan has relapsingremitting. The most common form, it is characterized by flare-ups of new symptoms or exacerbation of existing symptoms, followed by periods of partial or complete recovery.
“When he has a relapse,” Nick said, “Bryan goes to physical therapy: lifting weights, doing pushups, working with a balance ball, two or three times a week for two months.”
“We let him recover but don’t let him get lazy,” said Kathy.
Nick agreed: “We can’t let the disease win.”
UCSF’s is the only pediatric MS center west of the Rocky Mountains supported by a grant from the National Multiple Sclerosis Society (NMSS). The other five campuses are in Rochester, Minn.; Buffalo, N.Y.; Stony Brook, N.Y.; Boston, Mass.; and Birmingham, Ala.
But the Yglesiases have heard that a satellite may be started at the University of California, Los Angeles — much closer to home.
“Now that we’re seeing all these kids being diagnosed,” said Cindy Langwell, field programs manager for the Inland Empire Field Office of the NMSS’ Southern California Chapter, “it’s very important that the program come down here.”
Once a month, the NMSS hosts a chat line for teenagers with multiple sclerosis.
“But I want to meet other kids with MS,” said Bryan, who admits to feeling “different.”
He’s also noticed how often his father asks if he’s doing all right.
“That is love, Bryan,” Kathy reminded him. “Love and stress.”
At Maple School, where Bryan is in the sixth grade, only his closest friends know that he is sick.
“He doesn’t want the label ‘I have a disease,’ ” his mother said. “But I think other kids should know — just in case something happens.”
Word may get out soon enough.
Last year the Yglesiases took part in NMSS’ fundraising walk. And on April 14 Bryan plans to walk again, this time with his soccer team, the Apple Valley Storm. His favorite subject is math, but Bryan hasn’t yet chosen a career. “When he was little,” Kathy said, “he wanted to be a scientist and ‘cure something.’ Now he says no. “But I say, ‘Cure MS!’”