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Early diagnosis is important because there are now treatment options available that may help to slow the progression of the disease. There are also treatment modalities that can help with school and social issues as well as concerns regarding cognition.
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Tackling MS In Children
Written by Jamie Talan, Newsday Staff Writer   
Monday, 23 December 2002
When Vanessa Javor was 15, half her world went dark. First, vision in her right eye blurred. Two days later, the vision in that eye was gone. The blindness was temporary, and turned out to be a symptom of multiple sclerosis, the autoimmune disorder that attacks the insulation of the nerve fibers in the brain and spinal cord. Vanessa's vision returned, but the diagnosis remains.

Multiple sclerosis is considered a rare diagnosis in childhood. But doctors estimate that it may affect as many as 15,000 children and teenagers. Their symptoms include, in addition to vision problems, weakness so severe it threatens movement, abnormal sensations, numbness and disorganized thinking.

To address the condition and help young people like Vanessa — now 17, she has joined a mock trial group at her school, Newfield High in Selden, and wants to be a lawyer — doctors at Stony Brook University have opened the country's first pediatric multiple sclerosis center. So far they have treated 25 patients and are expanding the center in hopes of evaluating and treating more than 100 a year.

Dr. Lauren Krupp, director of the program, has spent recent years educating her colleagues in neurology and pediatrics about the signs and symptoms of multiple sclerosis. "We want to get the message out that MS does exist in young people and that we can treat them early to prevent relapses," she said.

Multiple sclerosis has been an elusive target for scientists. It comes in two forms: one in which symptoms occur and then disappear, known as remitting/relapsing; and another in which symptoms are more chronic and progressive.

Scientists do know that in MS the body's immune system attacks the myelin sheath of the nerve cell, its insulating component, . resulting in a garbling of nerve cell signals. Symptoms differ from patient to patient depending on where on the nerve the myelin sheath is damaged.

Patients' brains are marked by inflammatory scars, or lesions. Scientists suspect the lesions may ultimately damage the nerves themselves. Generally, when the lesions are present, so are the symptoms.

A decade ago treatments didn't exist. But in recent years approaches have been developed to reduce the size of the lesions and prevent new ones from forming.

As a result, Krupp and her colleagues now are aiming for earlier diagnosis in children, so treatment can be initiated. Early treatment, they believe, means a better long-term prognosis.

The center has reached out to doctors all over the world, looking for children with symptoms that may be going misdiagnosed. The youngest they have seen is a 6-year-old with no family history of the disease. Some children arrive laden with early misdiagnoses.

"It is a hard disease to identify if you don't know what to look for," said Krupp, a professor of neurology. "We need the right diagnosis as early as possible. The sooner children begin treatment, the more likely we are to slow the progression of the disease."

Until now, no study has included children with multiple sclerosis. The center will maintain a registry of information from each patient, with the aim of identifying different forms of disease progression and treatment responses.

Dr. Anita Belman, a Stony Brook pediatric neurologist, said that before medicines for MS became available, doctors were reluctant to give a diagnosis. "Doctors felt a great psychological burden would be placed on children with such a diagnosis," said Belman. Now that's changing.

Anthony Felice learned of his diagnosis on his 16th birthday. Three weeks earlier, he had awakened numb from head to toe. He had been trying out for a catcher's position on a team in his hometown, upstate Endicott, and thought the numbness was caused by a fall or too much practice.

On his birthday, he told his mother, Laura Kotsubka. By that afternoon, a brain scan identified 14 lesions in his brain and spinal cord, evidence of an acute MS episode.

Felice has the remitting/relapsing form, which is the more common condition. In the two years since his diagnosis, he has experienced 11 more episodes, and vision problems have left him legally blind. He was home-schooled during the year he was too weak to walk.

When he was referred to the Stony Brook center, his legs were like lead. He had tried every medicine except one, the chemotherapy drug Novantrone. It was approved for use in MS patients in 2000 after studies convinced federal drug regulators that it worked to reduce MS symptoms and prevent new episodes.

After his first infusion, the teenager climbed down from the examining table, walked a few steps and was so excited that he jumped into the air. He had two more, at three-month intervals. Now it's been a year since the last infusion.

"He is quite an inspiration," said his mother, who was also diagnosed with multiple sclerosis last year. Her son, now 19, can walk, but remains legally blind and has lost the keenness of his memory. He returns to Stony Brook several times a year for checkups and now attends Broome Community College in Binghamton, hoping his studies take him to the graduate level. He would like to teach history.

When Felice feels a negative mood coming on, he uses three words like a mantra: "Yes, I can."

Medical issues are only a one part of the Stony Brook center's program. Individual and group therapy sessions are offered for the children's emotional and social needs. And researchers are trying to assess memory and thinking problems, which are common in adult forms of the disorder.