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Pediatric (Childhood) MS

Families with multiple sclerosis can be reassured that the risk of their children acquiring MS at any age is low, varying from about 1 in 100 if an aunt or uncle has MS to approximately 1 in 40 if a parent has MS. This compares to a 1 in 750 chance of a child getting MS over a lifetime in the general population.

Multiple sclerosis (MS) historically has been viewed as an adult-onset disease and the majority of research and support programs have targeted adults. Since 1980, however, over 400 cases of childhood MS have been recorded in over 25 medical publications. Initial symptoms have been seen as early as 13 months old, with diagnosis as young as 2 years of age. Largely because of new technology, the numbers of children and adolescents diagnosed with MS are steadily growing.

An estimated 400,000 Americans have MS, and of these, 8-10,000 are children or adolescents. However, an additional 10-15,000 have experienced at least one symptom suggestive of MS. Some of these will go on to develop MS, although in most cases, they will not actually be diagnosed until they are adults. The advent of the MRI and other new ways of detecting MS lesions in the brain and spinal cord have resulted in numerous articles in the MS literature citing case after case of pediatric MS across the country. Because neurologists so rarely encounter childhood MS, diagnosis may be delayed or more difficult than for adult-onset disease.

Today, childhood MS is often treated in the same way as adult MS. In addition to a range of interventions to treat the various symptoms that can occur, there are four injectable disease-modifying drugs that have been shown to alter the course of the disease. These drugs have dosing schedules ranging from once a week to every day. The medications have been tested and approved for use by adults, but have not been systematically studied for children.

Although consensus guidelines exist for diagnosis and treatment of adult MS, none have been developed for children and adolescents—largely because little is known about the impact of MS on this young population. Neurologists who treat children with MS have reported, however, that some children present with cognitive difficulties that may impact academic achievement. Some studies also indicate that more young girls are diagnosed with MS than young boys, mirroring a gender imbalance also seen in adults with the disease.

MS is a disease that affects the whole family. Its impact is felt throughout the entire family system, affecting communication, relationships, and daily functioning. Symptoms such as extreme fatigue, weakness, bladder problems, and cognitive changes may alter the child's ability to participate in normal childhood activities. Children may also exhibit a range of emotions and behaviors—such as aggression, chronic depression and generalized anxiety—as a secondary consequence of diagnosis.

support

Young Persons with MS: A Network for Families with a Child or Teen with MS

Contact the Program Coordinator
Toll free:
1-866-KIDS W MS
(1-866-543-7967)
or
send an e-mail to childhoodms@nmss.org.

U.S. residents can also
contact your Society chapter.
Toll-free: 1-800-344-4867

Find out more about the Network

Pediatric MS Centers of Excellence

Kaley Zeitouni Kaley Zeitouni, founder of YAMS (Youth Against MS)

Pediatric MS Study Group

  • Increase knowledge of pediatric MS
  • Increase awareness of pediatric MS
  • Provide increased services for children and parents

Read more about the Pediatric MS Study Group

webcast icon Webcast
(transcript available)
   

Helping Kids with MS
featuring Dr. Lauren Krupp

The Wall Street Journal—
Feb. 28, 2006: "The New Face of Multiple Sclerosis: Doctors Increasingly Detect The Disorder in Children"
Download PDF of article

 

Parents have valid concerns about their child's health, education, and future, and the National MS Society has established a broad range of initiatives to help families with a child or teen with MS.

As the leading private funder of MS research, and because of the critical need to better understand childhood MS, the National MS Society established the first-of-its kind network of Pediatric MS Centers of Excellence. The centers were established in geographically diverse areas so that they can serve as regional centers for as many children and families living with MS as possible. They are staffed by teams of pediatric and adult MS experts who lead the field in MS diagnosis and treatment. The Center locations are:

  • Center for Pediatric-Onset Demyelinating Disease at the Children's Hospital of Alabama, University of Alabama at Birmingham
  • Pediatric MS Center of the Jacobs Neurological Institute, State University of New York at Buffalo
  • Mayo Clinic T. Denny Sanford Pediatric Outpatient Center, Rochester, MN
  • National Pediatric MS Center at Stony Brook University Hospital, Long Island
  • Partners Pediatric MS Center at the Massachusetts General Hospital for Children in Boston
  • University of California, San Francisco Regional Pediatric MS Center

Get more information on the Pediatric MS Centers of Excellence



For more information...

     
Last updated November 19, 2007    
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