Summer 2011

Pediatric MS — Treatment of a 'Hidden' Disease

Pediatric multiple sclerosis (MS) might afflict some 10,000 children in the United States, but because few physicians are familiar with the childhood version of this disorder, it tends to be underdiagnosed and undertreated.

Waubant"Families struggle to find appropriate care," said neurologist Emmanuelle Waubant, M.D., Ph.D., director of the UCSF Regional Pediatric Multiple Sclerosis Center, the only National Multiple Sclerosis Society-funded center of excellence west of the Rockies and one of six in a nationwide network.

What's Different?

For physicians, addressing childhood MS poses unique challenges.

  • Diagnosis — "In children younger than 11 or 12, MRIs and spinal fluid show more diffuse inflammation, which might explain why younger children have more symptoms, such as encephalopathy or headaches," Waubant said. Numerous common conditions could be the initial signs of MS.
  • Medical Treatment — Because most MS medications have not been tested in children, physicians unfamiliar with pediatric MS can be uncomfortable prescribing a course of treatment.
  • Addressing Social and Cognitive Concerns — "The cognitive deficits associated with MS can be relatively subtle, but they're especially difficult for children, who are developing new abilities every day," Waubant said.

Early Referral Matters

MS teamWaubant recommends that any child with early warning signs be referred as soon as possible to a comprehensive center, like the one at UCSF. Its National MS Society grant enables the center to see patients who qualify for assistance for free, and to at least partially support long-distance travel with airline tickets or hotel rooms, when necessary, although the center's funding has recently decreased.

At the center, the daylong initial appointment includes meetings and examinations with a:

  • Pediatric neurologist
  • Adult neurologist with MS expertise
  • Neuropsychologist who also acts as a school liaison
  • Neuro-ophthalmologist
  • Social worker

"Once they have a diagnosis and prognosis, many families experience a sense of relief, as treatment can then be initiated, if necessary," Waubant said.

Education Is Crucial

The centers in the nationwide network also are dedicated to collaboration with referring physicians, families and smaller MS centers through educational tools, counseling and research.

For families, the center's materials and activities range from printed materials for patients, parents and teachers to an annual family day and summer camp for patients.

For physicians, the center publishes a free newsletter, and Waubant recently co-edited the first comprehensive text on pediatric MS (Demyelinating Disorders of the Central Nervous System in Childhood, Cambridge University Press, 2011). "In addition, phone consults are very much a part of what we do," Waubant said.

Finally, the center is part of a soon-to-begin five-year case control study — sponsored by the National Institute of Neurological Disorders and Stroke — that will examine the environmental and genetic risk factors for disease onset.

Clinical Indicators for a Pediatric MS Consult

Indicators to determine the need for a consult or evaluation include:

  • Optic neuritis
  • Diplopia
  • Imbalance and dizziness
  • Partial transverse myelitis or other sensory or motor deficits, including acute disseminated encephalomyelitis

In addition, consider referral for a combination of minor symptoms in children under age 11 that include:

  • Slight vision decrease, especially if unilateral
  • Headaches
  • Lethargy
  • Transient behavior change

For more information, contact Dr. Waubant at (415) 514-2468 or the Pediatric Multiple Sclerosis Center at (415) 353-3939.

For information about participation in pediatric MS research, call (415) 514-2476.

Summer 2011 Table of Contents

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