Dr. Emmanuelle Waubant
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.
"Families struggle to find appropriate care," says neurologist Emmanuelle Waubant, M.D., Ph.D., director of the UCSF Regional Pediatric Multiple Sclerosis Center, the only National MS Society-supported Center of Excellence west of the Rockies and one of nine in a nationwide network.
For physicians, addressing childhood MS and related diagnoses poses unique challenges.
Diagnosis — "In children younger than 12, MRIs and spinal fluid show more diffuse inflammation, which might explain why younger children with MS have more symptoms, such as encephalopathy or headaches," says Waubant.
Medical Treatment — Because MS medications have not been tested in children, physicians unfamiliar with pediatric MS can be uncomfortable prescribing such treatments. The national network has found that about 30 percent of children have breakthrough disease on first-line therapies. Comprehensive centers are better prepared to help families understand the difficult choices about whether to escalate to potentially more risky medications to better control the disease.
Addressing Social and Cognitive Concerns — "The cognitive deficits associated with MS can be relatively subtle, but they’re especially difficult for children, who have to acquire new skills every day," says Waubant. A multidisciplinary clinic offers testing to assess those skills and possible deficits.
Waubant recommends that any child with early warning signs be referred promptly to a comprehensive center, like the one at UCSF, which can support patients who qualify for assistance. The initial appointment may include sessions with:
"Once given a diagnosis, many families experience a sense of relief, as treatment can then be initiated, if necessary," says Waubant.
The centers in the nationwide network also collaborate with referring physicians, families and smaller MS centers through educational tools, counseling and research.
The center’s printed and online materials and face-to-face activities – and the opportunity to network with others — helps some families cope with feelings of isolation.
For physicians, the center publishes a newsletter, and Waubant co-edited the first comprehensive textbook 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 says.<./p>
In all children, consider referral for one or more of the following symptoms:
In children under age 11, also consider referral for a combination of minor symptoms that include:
For more information, contact Dr. Waubant at (415) 514-2468 or the Pediatric Multiple Sclerosis Center at (415) 353-3939, or visit www.ucsfbenioffchildrens.org/ms.
For information about participation in pediatric MS research, call (415) 514-2476.
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