Although multiple sclerosis (MS) most commonly affects people who are ages 20 to 40, as many as 5 percent of MS patients develop symptoms during childhood. Yet many features of the natural history of pediatric MS, as well as best practices for diagnosing and treating the disease, are not fully understood.
Mayo Clinic in Rochester, Minn., has been recognized by the National Multiple Sclerosis Society as a "pediatric MS center of excellence." The multidisciplinary practice focuses on evaluating and treating children with MS and other central nervous system (CNS) disorders. In conjunction with five similarly designated centers, Mayo researchers also are enrolling patients in a database to support studies on the causes and management of these CNS disorders in children.
"Our goal is to learn more about pediatric MS so we can establish treatment guidelines and standards and be in a leading position to offer the best care for these patients," says Jan-Mendelt Tillema, M.D., a pediatric neurologist at Mayo Clinic in Rochester, Minn.
For physicians, the challenges of pediatric MS begin with diagnosis. Magnetic resonance imaging (MRI) plays a large role, as it does in adults. "But magnetic resonance imaging of children can be much more difficult to interpret," Dr. Tillema says. For example, lesions may be less sharply demarcated. Distinguishing between MRI patterns in MS and acute disseminated encephalomyelitis (ADEM) — which occurs more frequently in children and adolescents than does MS — can be challenging, particularly after a single episode of signs and symptoms.
Following subsequent attacks, MRI often can show clearer evidence of disease, which is required to make the diagnosis of MS. Dr. Tillema notes that research studies with a small number of patients suggest MS attacks tend to occur more frequently in the initial phase of the disease in children than in adults — a feature he has witnessed in his own practice. "It's not uncommon for kids to have a few attacks within a year or two, whereas in adults it is more often — but not always — the case that episodes are spread out over several years," he says.
Treatment for pediatric MS relies on the same medications used in adults, although randomized controlled trials needed for Food and Drug Administration approval of such medications have not included pediatric patients. One of the major goals of the pediatric centers of excellence is to facilitate large-scale research initiatives.
"There is increasing experience in using MS medications in kids. Based on studies of these cases, we know more about the similarities and differences in both efficacy and side effect profiles in children," Dr. Tillema says. "The future target is to find the safest and best drugs to treat MS in children, rather than extrapolating that information from adult studies."
Currently, the most effective and commonly used MS medications for children must be injected. Complications may include lowered white cell count and liver irritation or injury, so children must have frequent lab evaluations. Other common side effects include reactions at the injection site and flu-like symptoms such as fatigue and malaise. Although these adult medications appear to be beneficial in reducing MS attacks, "we see some pediatric patients whose side effects or anxiety over injections are so disturbing that families choose to discontinue the medication," Dr. Tillema says. "Fortunately, as more medications are coming out, there are alternatives. But these decisions can be difficult for patients and families."
Like adults, children with MS may benefit from consultation with a neuropsychologist, rehabilitation specialist and ophthalmologist, if vision problems develop. At Mayo, evaluations with all of these specialists typically are prescheduled. "If there are any other comorbidities, we have the opportunity to consult our other pediatric specialists if needed," Dr. Tillema says.
Pediatric MS is uniquely challenging because its repeated attacks on the CNS occur during childhood development. According to an article in the January 2013 issue of Journal of Child Neurology, in a recent study of pediatric patients, researchers from Mayo and other pediatric MS centers of excellence identified cognitive impairment in 35 percent of study participants with MS and 18 percent of participants with clinically isolated syndrome.
At Mayo, these data are used not only for research but also as guidance for families facing potential school-related problems. The results of neuropsychological testing can help parents and school officials understand the difficulties faced by children with MS as they mature. "We frequently see older kids who want to transition to college or a future career. These children can encounter problems in school," Dr. Tillema says.
As a major center for adult MS, Mayo can also offer pediatric patients a smooth transition in their medical care for a lifelong disease. Moses Rodriguez, M.D., a neurologist and MS specialist at Mayo Clinic in Minnesota, for many years has worked closely with Mayo's pediatric neurologists treating these patients. Dr. Rodriguez was also among the neurologists who initiated the national network of pediatric MS centers of excellence.
"The combination of expertise is a real strength for patients," Dr. Tillema says. "It helps not just with transition for future care but also with current care. The uncertainties that come with the physical and emotional challenges of MS can be very distressing to both patients and their caregivers. Mayo Clinic's expertise in pediatric MS allows our treatment team to provide families with answers to many of these questions, and with optimal neurological care."
Julian L, et al. Cognitive impairment occurs in children and adolescents with multiple sclerosis: Results from a United States network. Journal of Child Neurology. 2013;28:102.