It’s estimated that close to a half million individuals in the United States have multiple sclerosis (MS), a chronic, potentially debilitating disease that affects the central nervous system. Included in this number are approximately 10,000 children below age 18 with the diagnosis of the disease and another 10,000 with symptoms of MS. In fact, MS is the most common disabling disease of young adults.
MS is an immune-mediated disorder, meaning that instead of fighting infections the immune system gets misdirected and attacks the covering of nerves — or myelin — in the brain and spinal cord. The attack on the myelin causes the symptoms of MS.
Symptoms of MS include problems with vision, transient vision disturbance, weakness, walking difficulties, poor balance, abnormal sensory changes, as well as fatigue. Another sign is clumsiness, which is more evident in the heat. Sometimes young children won’t complain of these symptoms, which can make the diagnosis difficult. Parents should note when any of these symptoms last days or longer.
Diagnostic tests, such as an MRI or spinal tap, provide evidence of abnormalities on the brain and spinal cord. Fortunately, when diagnosed early, MS can be treated effectively. One of the biggest challenges is educating health care providers that this condition can and does affect young people including children under the age of 10.
There are currently six disease modifying medications available to treat people with MS. Originally they have all been studied in adults. However, results to date suggest they’re safe and effective as a treatment of choice by physicians for children with MS. Presently, none of the medications are available in pill form, but research is actively working to come up with more easily administered therapies. The most frequently prescribed treatments are Interferon beta 1a (Avonex, Betaseron and Rebif) and Glatiramer acetate (Copaxone). All these are designed to alter the disease course to one more favorable and all require injections (similar to those taken by patients with diabetes). Each medication has its own advantages. They differ in the type of possible side effects and the frequency of the injection.
The decision concerning which medication and protocol to use usually depends on a discussion between the family, patient and health care provider. Most side effects are minimal and typically disappear with time. It’s noted that these treatments are the most effective interventions available to decrease the neurological impact of MS.
It’s also important to know there are additional activities that should be incorporated into a child’s lifestyle. Exercising, playing and participating in regular school activities are imperative to being a kid. Of course, these activities also offer an opportunity for children to have a feeling of overall wellness since they help them to feel like every other child.
The family dynamics may be affected by the diagnosis of a child. Group or individual support counseling can help family members to cope in a positive manner.
A special four-day camp (retreat) proves to be an exciting opportunity for teenagers with a diagnosis of MS. This Teen Adventure Program in Rhode Island offers an environment in which to participate in activities such as kayaking, sailing and navigating a high rope course, while building team spirit and confidence among others with MS. It also allows kids to meet others coping with the daily challenges of MS, and provides them with an opportunity to discuss and observe how each person manages their disease and disease process. To find out more, check www.pediatricmscenter.org or contact Maria Milazzo at 631-444-7802.
If you’re an adult with MS, don’t worry. Most parents with MS don’t have children with the disease. For more information or if you’re interested in research dedicated to end MS for both kids and adults, call 631-444-8164.
What should you do if your child has MS?
• Get the opinion of a pediatric neurologist.
• Access the Web site of the National Pediatric MS Center (pediatricmscenter.org) and the National MS Society (nmss.org).
• Call the National Pediatric MS Center at Stony Brook University Medical Center, 631-444-7802.
• Contact the NMSS, 800-FIGHTMS.
A Local Resource
The National Pediatric MS Center at Stony Brook University Medical Center is one of six regional Pediatric MS Centers of Excellence in the United States. It’s the only center within the Metropolitan and tri-state area specifically devoted to kids who might have MS. The goal is to care for the patient and family while educating the community about MS and the overall affects it has on caregivers. Education and awareness are important so the symptoms and signs can be quickly reco-gnized, which in turn will lead to an earlier diagnosis and treatment protocol. The earlier a treatment program begins, the more effective the results.Lauren Krupp, M.D., is currently a professor of neurology and psychology at Stony Brook University Medical Center and specializes in multiple sclerosis in children and adults. She’s the director of the National Pediatric Multiple Sclerosis Center at Stony Brook.