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For Young Patients, Help With M.S. |
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Written by Barbara Gerbasi, New York Times
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Saturday, 22 February 2003 |
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Six years ago, Crystal Vann's left foot suddenly shot out from under her, almost causing her to fall. A few days later she was unable to control her left hand.
The first doctor thought that Crystal, who is now 16, might be faking an illness. The second suspected a brain tumor. It wasn't until two years later that doctors at the Long Island Jewish Medical Center diagnosed her problem as multiple sclerosis, a disorder of the central nervous system. Its symptoms can include loss of vision, numbness, paralysis and cognitive difficulties.
Multiple sclerosis is relatively rare in childhood, affecting 15,000 to 20,000 children and teenagers nationwide, compared with 350,000 adults, the majority of them women between 20 and 50.
Doctors at L.I.J. sent Crystal to Dr. Lauren Krupp, a neurologist and multiple sclerosis specialist at Stony Brook University Hospital. Dr. Krupp had treated children and teenagers with M.S. before, but each time a new patient came in, she grappled again with what she considered a major deficit in the diagnosis and treatment of the disease.
''As a mother, I could only begin to imagine how devastating it would be to have a child with a serious illness and nowhere to turn,'' she said. ''There were plenty of places for adults with M.S. to go for treatment, but there was no place just for children and adolescents, and there was literally no body of research on M.S. in young people.''
Dr. Krupp set out to change that, and in the last two years, she has been instrumental in founding the Pediatric Multiple Sclerosis Center at Stony Brook University Hospital, the first center of its type in the nation. It opened last November, with Dr. Krupp as its director.
Although 350,000 American adults have M.S., it was not until 1980 that the first childhood case was reported. Since that time, largely because of new diagnostic technology like magnetic resonance imaging, the numbers of children and adolescents diagnosed are steadily growing.
Dr. Donald A. Taylor, a pediatric neurologist and the medical director of the Children's Hospital in Richmond, Va., saw his first case 20 years ago, but now he sees one to two cases a year. ''Pediatric M.S. is uncommon, but it's real,'' he said. ''Patients who have recurrent uncommon neurologic symptoms require evaluation.''
Diagnosis is often delayed because many pediatric neurologists rarely encounter childhood M.S. and have no experience in treating it, said Dr. Anita Belman, a pediatric neurologist and member of the Stony Brook M.S. team. ''Prior to the last decade pediatric neurologists were reluctant to make a diagnosis of M.S. because there wasn't any treatment to offer,'' she said.
Yet early diagnosis is especially important for young people. ''Treatment in the first stages of the disease can alter its course,'' Dr. Krupp said, and in the last decade four drugs, Betaseron, Copaxone, Avonex and Rebif have been approved to treat multiple sclerosis.
The approach at Stony Book is comprehensive, and an M.S. specialist, pediatric neurologist, pediatric psychiatrist and a neuropsychologist evaluate each patient.
Financing for the Stony Brook center has come mostly from donations, including $7,500 from the Nassau-Suffolk chapter of the National Multiple Sclerosis Society. ''An additional grant of $7,500 was given by the pharmaceutical companies Berlex, Biogen, Teva Neuroscience, Serono and Immunex,'' Dr. Krupp said.
Money remains a problem, and the center is actively seeking donations and applying for grants. One of Dr. Krupp's goals is to raise awareness about pediatric M.S., and so the center sends brochures and letters to pediatricians and pediatric neurologists and conducts teleconferences with medical professionals.
Doing research on children with multiple sclerosis may provide far-reaching clues about the disease. ''Children will lead us closer to understanding M.S.,'' said Dr. Nancy Holland, the vice president for clinical programs of the National Multiple Sclerosis Society. ''They haven't been exposed to as many environmental factors as adults have, and with them we will be able to get a clearer sense of what is going on.''
Since the opening of the Stony Brook center, the team there has seen some 35 patients. Most come from New York, New Jersey or Connecticut, but some have come from as far away as California.
Fatigue and problems with cognition are major problems for most M.S. patients. ''Many sacrifice speed for accuracy,'' said Dr. William MacAllister, the team's neuropsychologist. ''Sometimes the recommendations are simple. In the case of a student who couldn't remember her lock combination and was upset at being late for class, all it took to solve the problem was giving her a key to open the lock.''
Dr. MacAllister works with school personnel to help make the necessary modifications in the students' workload and in arranging for untimed tests.
For anyone with multiple sclerosis, including adolescents, depression may be a factor. ''I think that depression and anxiety in this population is severely underrecognized,'' said Dr. Deborah Weisbrot, the team's pediatric psychiatrist. ''M.S. involves the brain, which is the site of emotions and also controls body functions. The question then is, 'Is the patient depressed because he has M.S., or does M.S. make the depression worse?'''
Dr. Weisbrot does a psychiatric interview with each patient, and for those who need it, psychotherapy and antidepressants are provided.
Then there are patients like Crystal Vann. ''Crystal's a trouper,'' Dr. Krupp said. ''Despite several attacks and hospitalizations, she literally always lands on her feet.''
Now a junior at Babylon High School, Crystal said that thanks to the tutors who taught her at home during her relapses, she had caught up with her classmates. She also works part-time at Wendy's in West Babylon.
''M.S. doesn't stand in my way,'' she said.
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