To learn more about childhood MS, we spoke with Dr. Teri Schreiner, a pediatric neurologist at the Rocky Mountain MS Center at Anschutz Medical Campus. Currently, Dr. Schreiner treats about 55 pediatric patients—a number that grows each year.
Tell us about pediatric multiple sclerosis. How is it different from MS in adults?
Multiple sclerosis is primarily a disease of adults. However, 5 to 10 percent of patients with MS are diagnosed when they are younger than 18 years old, and we call this pediatric multiple sclerosis. Most kids with MS are in their teenage years but MS has been diagnosed at much younger ages. I have two patients who were diagnosed at age 6, and just this past week we diagnosed a 7 year old.
Although we believe that it is the same disease process—meaning a deregulated immune system that erroneously attacks the central nervous system—pediatric MS differs from adult MS in many ways. First, it is more common for young, prepubescent patients to present with encephalopathy, which means that they are not thinking clearly. They may be very sleepy—sleeping 20 hours a day for example. Or they could be frankly psychotic, like seeing things that aren’t there or hearing things that aren’t spoken.
Also, MRIs of pediatric patients can look very different from those of adults. Lesions tend to be larger, more diffuse, and recovery—at least on the short term—tends to be better. Spinal fluid in children looks different from that of adults as well. Another big difference is that in the youngest patients with MS, the ratio of females to males is much more even. In adults, MS is four times more likely in women than men.
What does a diagnosis of MS mean for young people—how does it impact their lives and interactions with others?
These kids are being diagnosed with a chronic disease at a very young age, meaning they’re going to have this disease their whole lives. Unfortunately, disability accrues with MS. We know that kids diagnosed with MS can reach a significant level of disability at the same age or younger than adults diagnosed with MS. Therefore, it is important for pediatric patients that appropriate treatment is instituted to delay disability.
Also, the psychosocial impacts of having a chronic disease as a child are huge. It affects not only the child’s self-esteem and confidence, but it also interferes with—and changes—family and social dynamics. Particularly in the teen years, conformity is more the norm and anything that differentiates you from your peers is negatively perceived and not understood. As such, for some pediatric patients bullying is a problem. There is also a misconception at school that MS is contagious. This is not the case. Although there may be an increased risk of multiple sclerosis within a family, that is likely due to a combination of factors, including genetic predisposition and environment. But as far as we know, there is no feature of MS that is contagious.
You are recruiting for a study of young patients that will explore genetic and environmental risk factors for MS. Why is pediatric MS research important?
From a research standpoint, I think we have the opportunity to learn something from the disease by studying it in children. Presumably, when children are diagnosed with MS, it’s because they have some environmental exposure or genetic risk factor. From tracking children’s exposures—which we hope are fewer because they are younger—we might be able to correctly identify the risk factors necessary for triggering the disease. If we figure that out, it might have implications for all patients with the disease, not just children.
How does living with MS affect young people? Watch this video and learn how CO youth are learning to live with multiple sclerosis, and what their parents do to help them thrive.