Multiple sclerosis in children rare – but often worse

July 27, 2013

BOSTON — Two years ago, at age 12, Peter Marggraf of Newfields, N.H., suddenly started talking oddly, his face went blank and he couldn’t remember what year it was. He spent 10 days at Boston Children’s Hospital and still, no one was sure what was going on.

Victoria Esselman was also 12 when she had her first episode. Her right arm had been tingling for several months — as if it had fallen asleep and couldn’t wake up — and then her eyes started moving in different directions. “One went one way, the other went the other way,” her mother, Odette Esselman, of Medford, Mass., said.

Victoria, also ended up at Boston Children’s, where both she and Peter were eventually diagnosed with multiple sclerosis.

MS is well known as a devastating disease, usually striking women in their mid-30s or 40s. Patients are told that they are heading down an uncertain path that will lead to clumsiness and discomfort, and possibly a wheelchair and/or loss of brain function.

As devastating and mysterious as such a diagnosis is in adults, the disease is often worse in children, who generally have more troubling episodes, as well as more years to decline. Though quite rare — only about 8,000 children have the disease worldwide — pediatric MS is gaining medical attention.

Pediatric MS was virtually unheard of before the definition of the disease was changed in 2001 to allow patients under 15 to receive the diagnosis. The youngest child diagnosed so far was just 20 months.

The field has come far since then, said Lauren Krupp, a neurologist and director of the Lourie Center for Pediatric MS at Stony Brook University in Long Island, N.Y.

Drug companies are now poised to begin the first clinical trials in children with MS. Nine centers are now collaborating across the country to share data and treatment advice. And researchers, including Krupp, believe that studying these children will help them better understand the environmental triggers that lead to MS and perhaps all autoimmune diseases.

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