Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001, to allow patients under 15 to receive the diagnosis. Now 8,000 have been diagnosed worldwide.
Karen Weintraub, Special for USA TODAY 12:10 p.m. EDT July 30, 2013
BOSTON — Two years ago, at age 12, Peter Marggraf of Newfields, N.H., suddenly started talking oddly, his face went blank and he couldn’t remember what year it was. He spent 10 days at Boston Children’s Hospital and still, no one was sure what was going on.
Victoria Esselman was also 12 when she had her first episode. Her right arm had been tingling for several months — as if it had fallen asleep and couldn’t wake up — and then her eyes started moving in different directions. “One went one way, the other went the other way,” her mother, Odette Esselman, of Medford, Mass., said.
Victoria ended up at Mass General Hospital for Children, and both she and Peter were eventually diagnosed with multiple sclerosis.
MS is well known as a devastating disease, usually striking women in their mid-30s or 40s. Patients are told that they are heading down an uncertain path that will lead to clumsiness and discomfort, and possibly a wheelchair and/or loss of brain function.
As devastating and mysterious as such a diagnosis is in adults, the disease is often worse in children, who generally have more troubling episodes, as well as more years to decline. Though quite rare — only about 8,000 children have the disease worldwide — pediatric MS is gaining medical attention.
Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001 to allow patients under 15 to receive the diagnosis. The youngest child diagnosed so far was just 20 months.
The field has come far since then, said Lauren Krupp, a neurologist and director of the Lourie Center for Pediatric MS at Stony Brook University in Long Island, N.Y.
Drug companies are now poised to begin the first clinical trials in children with MS. Nine centers are now collaborating across the country to share data and treatment advice. And researchers, including Krupp, believe that studying these children will help them better understand the environmental triggers that lead to MS and perhaps all autoimmune diseases.
“There is reason to believe that a lot of the factors leading to MS are going to be the same in kids and adults, but you can find it more readily in the kids,” said Krupp. “If you have a 6-year-old, you’ve got a lot better chance of sorting out what the risk factors are (than with a 46-year-old), because they’ve just been exposed to them.”
It’s also possible, she said, that whatever is triggering MS in kids is stronger — and therefore will be easier to find — than it would be in adults.
No one knows what those triggers might be, but there is mounting evidence that obesity, smoke exposure, parents’ autoimmune diseases, and early exposure to the Epstein-Barr virus that causes mononucleosis might all be factors, said neurologist Tanuja Chitnis, director of the pediatric MS center at Massachusetts General Hospital for Children in Boston. The genetic underpinnings of MS might be the same in children who get the disease, or different from adults, she said.
Many adults with MS, in retrospect, realize that they had their first symptoms in childhood. There may be clues in the symptoms of teenagers like Peter and Victoria that have been missed before, said Nicholas LaRocca, vice president of the National MS Society, which this month committed $2.5 million to study pediatric MS.
“We still don’t know when MS actually begins,” LaRocca said. “The more we can understand about pediatric MS, the more it will tell us about the overall trajectory of MS, not only for youngsters but even for those diagnosed in adulthood.”
Until now, kids like Peter and Victoria have had to take drugs approved for adults — and hope their doctors figure out a useful dose for them. In the next few months, though, studies will begin on youths, testing to see what dose might be appropriate and whether one drug might work better than others.
Peter and Victoria have had very different physical and emotional trajectories with MS.
Victoria, now 16, spent a week this month at summer camp for kids with MS — teens she keeps up with all year via Facebook and other social media. She’s had annual relapses and other problems, but says the MS friends she’s made help her get through.
“Those events have become my life,” she said. “They are the reason I’m OK with having MS.”
Peter, an avid fisherman who has struggled to catch up with schoolwork after his “lost” seventh-grade year, doesn’t have other friends with MS — or want them. “I’d just rather do my own thing.”
Mostly, he just tries to forget he has the disease.
“I feel perfectly normal,” he said. “I don’t think it hinders me — only when I’m actually sick.”