Although rare, between 3 percent and 5 percent of the MS population had symptoms before age 18
Children were falling through the cracks. A decade ago, when a child developed signs of a problem that primarily affects adults, their pediatricians generally had little or no experience, while the medical care workers who did hadn’t worked with children.
It was a problem Lauren Krupp decided needed action. A professor in clinical neurology and a practicing physician at Stony Brook University, Krupp founded the National Pediatric Multiple Sclerosis Center, which was recently renamed the Lourie Center for Pediatric MS.
“We saw parents who were frightened and who were told that multiple sclerosis can’t occur in children, which is obviously not true, or they were told, ‘Yes, it is multiple sclerosis, but I’m an adult neurologist,’” Krupp recalled. “It makes a real difference to parents if they can take their child somewhere where there’s experience with something that’s rare.”
About 3 percent to 5 percent of the MS population has a disease that begins before age 18. Among children, MS occurs once for about every 100,000 people, Krupp estimated.
Krupp has been working with some of the other facilities designated as Regional Centers of Excellence by the National Multiple Sclerosis Society to develop a better understanding of the way MS progresses in children. Recently, she joined with several other researchers to publish research about the potential cognitive effects of the disease.
“This was the first time a uniform approach to looking at kids and their cognitive functioning was taken across the country,” she said. “We also included children at a very early stage of the disease.”
Children who had only one attack had an 18 percent frequency of cognitive problems. In children with more than one attack, the cognitive problems rise to about 33 percent.
As an example, she cited the case of a teenager who loved playing in her school band. All of a sudden, she was getting failing grades in music. The problem had nothing to do with music — she couldn’t remember her locker combination.
Some children with MS don’t need additional services (and may need a locker with a key instead of a combination lock), while others could need anything from having someone take notes in class, to getting extra time for tests, Krupp suggested.
“Cognition needs to be considered,” she explained. “We’re very eager to come up with interventions” to improve treatment.
She’s exploring the possibility of developing strategies that don’t necessarily involve medication.
“There’s a lot of promise in innovative computer-based training programs,” she said. She hopes to study some of these models in the next several months.
Krupp has also organized a camp called Teen Adventure, where children from 13 to 18 with multiple sclerosis can “go out there and do stuff and be like other kids.”
The camp enables networking among the children. Krupp says she doesn’t attend because she doesn’t want to “medicalize” the experience, although there is a team of experts, including nurse practitioners and recreational therapists, on site.
Krupp believes her efforts, as well as those of others in her field, including the National Multiple Sclerosis Society, have helped the medical community become aware of pediatric multiple sclerosis.
In people who have MS, the immune system attacks the myelin, or protective sheath around the axons of the brain and spinal cord, potentially leading to neurological, physical and cognitive problems.
The cause of MS, a disease in which the symptoms can include weakness, visual problems, numbness and trouble speaking, involves an interaction between a genetic predisposition and environmental factors.
Some studies have shown that the farther away people live from the equator, the higher the incidence of MS. Indeed, children born near the equator who move before the age of 15 develop MS at the same rate as those who have lived all their lives farther from the equator.
“We think the reason for this has to do with higher prevalence of sunlight exposure,” offered Krupp.
Sunlight is among the biggest sources of vitamin D. Doctors have different approaches to vitamin D. Many think the best strategy is to maintain a normal to high vitamin D level in the blood and use vitamin D doses as needed, she said.
Krupp and her partner live in Setauket. They have twin daughters, Gina and Alexa, who are on their respective sailing teams in college.
People who are interested in finding out more about the camp, Krupp’s research efforts, or ways to help can visit www.pediatricmscenter.org.
Krupp’s professional goal is simple: “To be put out of business. I would like to see the disease ended.”