Pediatric MS Centers of Excellence: Making Strides

  • As recently as 20 years ago, it was believed that children did not get MS.  We didn’t know then what is known now about pediatric-onset multiple sclerosis.  Even children under the age of 2 have been diagnosed with MS!

     

    But MS is not the only central nervous system demyelinating disease which is seen in children.  In fact, other diagnoses usually come first, just as adults with MS are often given a diagnosis of clinically isolated syndrome before definite MS.

     

    It can be frightening if your child has unexplained symptoms and the local doctors are unsure how to diagnose or treat your child for his/her condition.  If that disease is suspected of being a demyelinating disease such as multiple sclerosis, acute disseminated encephalomyelitis, or other related diseases, then there is good news.

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    In 2006, a nationwide network of Pediatric MS Centers of Excellence was established in the United States through the National MS Society’s Promise 2010 initiative targeting MS research and care.  This network of six centers offer evaluation, diagnosis, medical care and support to children under the age of 18 who have MS or other central nervous system demyelinating conditions such as acute disseminated encephalomyelitis (ADEM), optic neuritis (ON), transverse myelitis (TM) and neuromyelitis optica (NMO).

     

    According to their website, the Pediatric MS Centers of Excellence are working together to:
        1.    Improve evaluation and management strategies to enhance diagnosis and care of children with MS and other related disorders
        2.    Develop resources for families, health care professionals and the public
        3.    Collect data that will enable large scale research initiatives

     

    National MS Society shares that “the centers were selected (through a peer review process) on the basis of having multidisciplinary teams of adult and child specialists; ties to an adult MS center; staff to evaluate and address school and other psycho-social issues; support for families; and the ability to work collaboratively with other institutions in the network.”

     

    This network with Society-support has committed to providing comprehensive care to children with central nervous system demyelinating conditions, regardless of ability to pay.  Also, a child does not need to have a definite diagnosis to be evaluated at one of these centers.  Children with symptoms of a demyelinating disorder will be seen.

     

    Common symptoms for children with MS may include weakness, fatigue, numbness and tingling, vision problems, loss of balance, difficulty concentrating or remembering, and seizures. Many of these symptoms are “invisible,” vary in intensity, and come and go randomly.

     

    The Pediatric MS Centers of Excellence:
    (for additional contact information visit the National MS Society website)

     

    National Pediatric MS Center at Stony Brook University Hospital, Stony Brook, N.Y.
    Appointment line: 631-444-7802
    www.pediatricmscenter.org

     

  • Center for Pediatric Onset Demyelinating Disease at Children’s Hospital of Alabama, University of Alabama at Birmingham, Birmingham, Ala.
    Appointment line: 205-996-7633
    www.uab.edu/cpodd

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    UCSF Regional Pediatric MS Center, University of California, San Francisco, Calif.
    Appointment line: 415-353-3939
    www.ucsfhealth.org/pedsms

     

    Partners Pediatric MS Center at the Massachusetts General Hospital for Children, Boston, Mass.
    Appointment line: 617-726-2664
    partnersmscenter.org/index.php?id=62&mn=12

     

    Mayo Clinic Pediatric MS Clinic, Rochester, Minn.
    Appointment line: 507-538-2555 or 507-284-2111
    www.mayoclinic.org/pediatric-center or www.mayoclinic.org/multiple-sclerosis/children.html

     

    Pediatric MS Center of the Jacobs Neurological Institute, State University of New York, Buffalo, N.Y.
    Appointment line: 877-878-7367
    www.pedms.com (website was down last I checked)

     

    As recognition of childhood diseases of the central nervous system grows, so do special programs throughout the hospital system of the US.  Although not an official Pediatric MS Center of Excellence, Children’s Hospital in Boston also has a pediatric MS program.

     

    Pediatric Multiple Sclerosis and Related Disorders Program at Children’s Hospital Boston, Boston, Mass.
    Appointment line: 617-355-2758 or 617-355-2751
    www.childrenshospital.org/clinicalservices/Site1885/mainpageS1885P0.html

     

    If you are not near one of the six National Pediatric MS Centers of Excellence, check with the children’s hospital in your area and inquire as to their experience and expertise in diagnosing, treating, and supporting children with CNS demyelinating disorders and their parents.

     

    Additional information can be found at: www.nationalMSsociety.org/pediatricms

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: August 05, 2010