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Pediatric (Childhood) MS


Pediatric MS Study Group

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.

In response to the growing need to understand childhood MS, the National MS Society sponsored a pilot research project concerning the unique issues associated with this MS subgroup, which was conducted by Dr. Lauren Krupp, Department of Neurology, SUNY Stony Brook. The work ultimately led to Dr. Krupp initiating the first pediatric MS care center, National Pediatric MS Center at Stony Brook University Hospital (www.pediatricmscenter.org/), in the United States at her medical facility, where she now is treating more than 30 children.

Because much more needs to be learned about the characteristics of childhood onset MS, including specification of diagnostic criteria, collection of epidemiological data, assessment of behavioral manifestations, and development of effective interventions, the Society has recently established a pediatric MS study group and task force under the auspices of its Medical Advisory Board. The group is composed of leading clinicians who specialize in MS and who are presently treating a number of children and adolescents with MS.

Plans are under way to develop a database to record how children are first diagnosed, how they are treated, what type of physicians provide MS care, and what types of medications and other treatments are beingused. The group also wants to create a list of physicians who treat childhood MS—a resource that is particularly needed by parents who now have great difficulty finding adequate medical care for their children. This registry will be a first step in eventually developing a uniform diagnostic and assessment approach to treating childhood MS.


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


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

National Pediatric MS Center
Director: Dr. Lauren Krupp

Department of Neurology
HSC-T12-020
State University of New York at Stony Brook
Stony Brook, NY
11794-8121

E-mail: info@pediatricmscenter.org

Website:
www.pediatricmscenter.org

 

In 2002, the group met in Baltimore, Maryland, at what became the largest MS-specific conference ever held in the United States for neurologists. The purpose of the meeting was to determine their mission and develop goals and objectives for the coming year. A number of strategies were developed to support the group's three major goals:

  • Increase knowledge of pediatric MS among clinicians and other health care professionals nationwide in order to establish a common language, diagnostic approaches, and treatment options;
  • Increase awareness of pediatric MS among clinicians in both the United States and Canada, where there is an already established pediatric MS clinic at the Hospital for Sick Children in Toronto (www.sickkids.on.ca/);
  • Increased services for both children and parents including medical care, psycho-social support, and educational programs.

The chair of the pediatric MS study group and task force is Dr. Lauren Krupp, professor of neurology and psychology at the State University of New York at Stony Brook and the co-director of the MS Comprehensive Care Center (www.hsc.stonybrook.edu/). Among the other participants are Dr. Brenda Banwell, Department of Pediatrics, Hospital for Sick Children, Toronto, Canada, and a task force of fellow adult and pediatric neurologists.

Dr. Krupp summed up the sentiments of the group participants well when she spoke of the great need to understand this special MS sub-group, especially as a vital research target. Understanding childhood MS, she said, will shed light on the causes of MS and better treatments for the disease.

For more information...

     
Last updated December 19, 2005    
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