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Multiple sclerosis (MS) has an image as an "adult-onset" disease because it usually appears in people 20 to 50 years of age. But a growing number of MS diagnoses are being made in children and teens. The average age of onset for pediatric MS is 13.7 years, and it has been discovered in kids as young as 10 months old. 
MS is basically the same disease in adults and children, but when children get MS, the disease can present itself in unique ways and introduce special risks and concerns because it appears during the formative years of life. The most encouraging news, though it comes from limited research, is that disease-modifying therapy (DMT) that slows progression of MS in adults is also proving to be safe and effective in kids.* But there’s still a great deal to be learned about treatments and the full profile of pediatric MS.
Q. How common is pediatric MS?
A. Children under 18 now make up about 2% to 5% of the world’s 2.5 million people with MS. In the United States an estimated 8,000 to 10,000 children have it, but some experts say another 10,000 to 15,000 have disorders that are related to MS. Symptoms of pediatric MS often suggest other childhood illnesses, making diagnosis difficult.
Q. How is pediatric MS diagnosed?
A. In making a diagnosis, the doctor thoroughly examines the child and asks all about symptoms, including when they started and how they may have changed over time. Initial symptoms in kids are generally similar to those in adults. They may include:
- eye problems, such as double vision or sudden loss of vision
- clumsiness or weakness
- tremors
- dizziness
- muscle stiffness or spasms
- fatigue
- numbness and tingling in body parts
- difficulty concentrating, remembering, or paying attention
Some children with MS experience seizures or a change in mental status (such as lethargy), which are not typical in adults.
Because many kids with MS will have difficulties in at least 1 area of intellectual function (such as memory), cognitive tests are usually part of the diagnostic evaluation. The faster these problems are identified, the sooner the child can get special attention to sustain learning and school progress.
One or more magnetic resonance imaging (MRI) studies of the brain might be performed to confirm a diagnosis of MS. Wider use of this safe and noninvasive technology has made diagnosis much easier and faster. It presents a critical opportunity to intervene earlier in the course of disease.
Q. How does MS in kids differ from MS in adults?
A. In both adults and children, MS leads to the destruction of myelin, a protective coating around nerve cells in the brain and spinal cord. This damage disrupts nerve impulses involved in physical and cognitive processes. MS follows an unpredictable course that often results in deficits in mobility and thinking. But differences between pediatric and adult MS have become clearer. Kids with MS are more likely than adults to:
- be female rather than male. The female/male ratio is about 3:1 in kids and 2:1 in adults. The reasons are not clear, but sex hormones are suspected.
- be non-Caucasian. Most adults with MS are Caucasian. The reasons for either tendency are not clear.
- have relapsing-remitting MS, in which periods of symptoms (relapses) alternate with periods of full or partial recovery. About 98% of kids begin with this pattern, versus 84% of adults. Relapses in kids are usually less severe than in adults.
- experience slow progression of MS. Kids take about 10 years longer than adults to accumulate permanent disabilities.
- exhibit dramatic cognitive and emotional problems that interfere with learning, self-image, and relationships with peers and family. A possible reason may be that kids lack the cognitive skills to fall back on that adults already have in place.
Q. How is pediatric MS managed?*
A. According to some clinicians, selfadministered disease-modifying therapy is the cornerstone of pediatric MS management. This includes β-interferons (Rebif®, Avonex®, Betaseron®) and glatiramer acetate (Copaxone®), each of which has reduced the rate of relapses and delayed the progression of MS in adults.
No large-scale studies have tested DMTs in kids with MS, and these drugs are not currently approved for children or teens. In smaller studies, however, DMTs have been safe, beneficial, and well tolerated by kids. In one study, use of glatiramer acetate in 9- to 16-year-olds reduced the annual relapse rate from 4 per year before starting treatment to zero 2 years after treatment began. In another, subcutaneous interferon β-1a used for kids under 16 reduced the annual relapse rate from 2.9 to 0.8.
Experts now agree that children and teens should begin DMT as soon as possible after a diagnosis of MS, typically at a low dose that can be increased if needed. Like adults, children may experience side effects such as flu-like symptoms (associated with the β-interferons) and injection-site reactions. They must also accept the whole idea of injections, which may be a struggle for both the child and the parents. Training and support are available from qualified nurses to help everyone adapt.
Q. Can kids with MS lead full adult lives later on?
A. Pediatric MS seems to progress slowly, but it can still lead to disability at an early age. And throughout its course, MS threatens cognitive functions that are needed for moving forward in life.
But there are many reasons to be hopeful that kids with MS can lead full lives as adults. An early intervention in children with MS may result in fewer relapses and slower accumulation of disability. Plus, the need to create the psychosocial supports that allow kids with MS to keep learning and to achieve full adulthood is being recognized.
Finally, a child’s best asset for the future may be the brain itself. Young brains are remarkably "plastic"—capable of growth, repair, and compensation for deficits. This resiliency may also make children with MS more responsive to early intervention and attention, and therefore more likely to thrive as adults.
Q. What are some ways for kids with MS to cope?
A. Kids can cope best when they are supported by: family members, teachers, physicians, and other healthcare professionals who understand the impact of MS on school performance, recreation, self-confidence, family life, and the sense of "belonging."
The National Multiple Sclerosis Society (NMSS) has established a nationwide network of 6 Centers of Excellence dedicated to children with MS and other demyelinating diseases. A major goal is to enhance the care of these kids and to develop resources and education programs for families as well as for healthcare professionals. Through the Young Persons with MS Program, for example, the centers offer handbooks, teleconferences on MS topics, and virtual support networks for parents and teens.
Management techniques to alleviate MS-related difficulties such as physical therapy, speech therapy, occupational therapy, and psychotherapy, are also widely available to kids.
Q. Where can I find more information?
A. The NMSS offers information on MS in children. Call 1-866-KIDS W MS (543- 7967) or e-mail childhoodms@nmss.org. Pediatric MS Centers of Excellence are located at Children’s Hospital of Alabama, Birmingham; the University of California, San Francisco; Massachusetts General Hospital, Boston; the Mayo Clinic, Rochester, MN; Jacobs Neurological Institute, Buffalo,NY; and Stony Brook University Hospital, Stony Brook, NY. For Web links to these centers, visit this page.
