10 Things to Know About Kids and MS

So how do you know if a child has MS? It can take years to make a correct MS diagnosis in adults—there’s no single test for it—and it’s so rare in children, it might not be a pediatrician’s first thought. But there are some things to look out for in pediatric MS. For instance, “any symptoms of weakness, numbness, balance, or vision change should prompt a visit to the pediatrician and possibly a neurologist,” says Sarah Hopkins, M.D., a pediatric neurologist and section head for multiple sclerosis and neuroinflammatory disorders at Children’s Hospital of Philadelphia.

In adults, there are four types of MS: clinically isolated syndrome, relapsing remitting, secondary progressive, and primary progressive. Children typically have just one type: relapsing-remitting (RRMS). In RRMS, the disease has times of relapses when symptoms are active, called flares. Eventually, the symptoms subside, or remit. During this period, kids have no indication of the disease. “Children with MS often appear very healthy, with minimal neurological symptoms outside of their relapses,” Dr. Hopkins explains.

Multiple sclerosis, an autoimmune disease of the central nervous system, is marked by chronic inflammation. In pediatric MS, that inflammation is even more pronounced. “These children tend to have more frequent relapses and more evidence of brain inflammation on their MRIs as opposed to adults,” says Wendy S. Vargas, M.D., a pediatric neurologist at New York-Presbyterian/Columbia University Irving Medical Center. Relapse symptoms, including loss of vision in one eye, difficulty walking, and trouble with bowel or bladder function, generally last days to weeks before improving.

Good news, bad news: It takes a longer time after kids experience their first MS attack to reach the point of physical disability. However, because symptoms start when they are still children, they ultimately reach disability at a younger age than someone with the adult version of the disease. A New England Journal of Medicine study reported that for patients with pediatric MS, the estimated time from onset to what’s called “secondary progression MS” was 28 years (not bad), but the actual age when secondary progression MS occurred was 41, about 10 years earlier than for those with adult-onset MS.

While pediatric MS is rare (only 3% to 10% of all MS patients show signs of the disease before the age of 16), it’s even rarer in children grade-school age or younger, says Dr. Vargas. Just 1% of people with MS have symptoms before age 10.

How childhood onset of the disease impacts the rest of kids’ lives is still largely unknown. “For instance, we don’t think it affects their physical growth,” says Dr. Vargas, “but this has not been studied in depth.”

One thing we do know: Pediatric MS strikes children at critical moments in their brain development. In fact, studies of pediatric MS patients have found from 30% to 50% have cognitive impairment including difficulty with language development and lower scores on IQ testing. One study found that 26% of kids with MS had poor math performance. More ways to support children with pediatric MS in school are currently being examined, including earlier intervention.

Despite the fact that guidelines for pediatric MS recommend early treatment, until now doctors didn’t have dedicated medication or data from clinical trials on the best approach for kids. That all changed last year with the approval of Gilenya (fingolimod), a daily oral medication. A major milestone in fighting the disease, Gilenya is the U.S. Food and Drug Administration’s first approved drug for pediatric MS. Additional studies of other new drugs are underway. “These medications alter the body’s immune response in different ways to decrease the number of new lesions and MS relapses,” says Dr. Hopkins.

Treatment for pediatric MS involves more than just medication—a healthy lifestyle through physical activity and nutrition is also important, says Junella Chin, D.O., a neuromusculoskeletal medicine specialist in New York City. “Regular aerobic exercise is one of the best things children can do along with prescription medications,” she says. “It helps with conditioning, strength, muscle spasms, and pain.” Walking, running, swimming, and games like tag or hide-and-go-seek are great ways to get kids moving. Aim for 20 minutes daily. Bonus: Aerobic activity boosts kids’ moods as well.

The rarity of pediatric MS can make kids who have it feel like no one else understands. Enduring challenging symptoms during relapses and knowing they’re stuck with MS forever can take an emotional toll. “It can be an isolating disease for kids,” says Dr. Vargas. “Because it is so rare, it not likely that they will encounter another child with MS unless they attend a special event dedicated to children with the disease.” The National MS Society offers a brochure for parents of children with MS, including a “resources and support” section with info on ways kids can make peer connections.

If you have MS, you might be wondering if your children are at greater risk of getting it. Answer: Yes, but barely. “The risk of MS in the general population is about 1%. If you have a first degree relative with MS, your risk increases to about 3%,” says Dr. Vargas. It’s important to understand that MS itself isn’t an inherited disease—it’s not passed from generation to generation. But you can inherit a genetic risk of MS through mutations in one or more of about 200 genes that have been identified as playing a role in the disease.