Pediatric (Childhood) MS
From The MS Information Sourcebook, produced by the National MS Society.
Multiple sclerosis is generally thought of as a disease of adults, with onset most commonly between the ages of 20 and 50, and the highest incidence of new diagnoses among people in their 20s and 30s. The disease can, however, occur in children and teens. Since 1980, over 400 cases of children with MS have been recorded in over 25 medical publications, and children under the age of 17 are thought to make up between 2-2.5% of the MS population. Thus, of the 400,000 people with MS in the United States, approximately 8-10,000 are children or adolescents. An additional 10-15,000 have experienced at least one symptom that is suggestion of MS; of these, some will go on to develop clinically-definite MS, although the diagnosis will most likely be made in adulthood.
Initial symptoms have been seen as early as 13 months of age and the diagnosis has been confirmed in children as young as 2 years old. Because of technological advances that allow for earlier and more accurate diagnosis, the numbers of children and teens diagnosed with MS is growing. In addition to those already diagnosed with MS, an additional 10,000-15,000 have experienced at least one symptom that is suggestive of MS. Some of these will go onto develop MS, although most will not be diagnosed until adulthood.
Although consensus guidelines exist for diagnosis and treatment of adult MS, none have been developed specifically for children and adolescents—largely because little is known about the impact of MS on this young population. At the present time, childhood MS is generally treated in the same way as adult MS. In addition to the range of strategies used to treat the symptoms that can occur, there are five disease-modifying drugs that have been shown to alter the course of the disease. None of these medications, however, have been systematically studied in children.
The National MS Society recently established a Pediatric MS Study Group under the auspices of its Medical Advisory Board. The goals of the task force are to:
- Increase knowledge of pediatric MS
- Increase awareness of pediatric MS
- Provide increased services for children and parents
The chair of the taskforce is Dr. Lauren Krupp, professor of neurology and psychology at the State University of New York at Stony Brook, and co-director of the National Pediatric MS Center (www.pediatricmscenter.org/). According to Dr. Krupp, understanding childhood MS will shed light on the causes of MS and better treatments for the disease.
Because MS is more difficult to diagnose in children, and pediatricians are generally unfamiliar with the disease, the National MS Society is establishing regional Pediatric MS Centers to set the standard for pediatric MS care and offer optimal medical and psychosocial support to children and their families. These centers will create the framework to conduct critical research—both to understand childhood MS, and to unlock the mysteries of MS in adults.
In collaboration with the Multiple Sclerosis Society of Canada, the National MS Society has also created Young Persons with MS: A Network for Families with Child or Teen with MS. This support network offers a range of programs for children and parents.
For Healthcare Professionals
Kalb R. (ed.). Multiple Sclerosis: A Guide for Families (3rd ed.). New York: Demos Medical Publishing, 2005.
—Ch. 7 Parenting a Child or Teenager with MS