More children diagnosed with MS
By Kathleen Fackelmann
December 4, 2002
Kyle Wallace, age 9, loves to play football with his dad.
That's not unusual for a second-grade boy, but Wallace has multiple
sclerosis, the neurological disease once thought to strike adults only.
Researchers in a few medical centers in the United States and Canada say
they're seeing more children like Kyle who are diagnosed with the disease.
And the last thing the young patients want to think about is a disease that
can cause unpredictable bouts of paralysis, numbness, vision loss and a
host of other terrifying symptoms.
MS affects about 350,000 American adults, and experts estimate that as many
as 20,000 children in the United States have the disease but are
undiagnosed. New medical evidence suggests that the number of pediatric
patients is rising -- probably because more doctors are considering the
diagnosis when they see a child with telltale symptoms such as a sudden
loss of vision.
When a childhood diagnosis is made, doctors, parents and children are faced
with a number of unanswered questions. Researchers don't know whether the
drugs used to treat adults will work for children. They don't know how
quickly the disease will progress.
MS occurs when the body's immune cells turn and mistakenly attack the thick
sheath covering the nerve fibers of the brain and spinal cord. This
protective coating, myelin, is like the rubber insulation on an electrical
wire. When it's stripped, the nerve can be damaged, triggering a range of
symptoms such as tremors or slurred speech. But the course of MS doesn't
follow a predictable pattern.
Some people with MS have attacks that can last several days to a week and
then fully recover. They may not get another attack for a year or even a
decade. Others will get several attacks spaced out over a year. A small
number of people with MS get steadily worse with each attack.
Into the unknown
But that's the way the disease progresses for adults. No one knows what
will happen to kids like Kyle. Lauren Krupp at the State University of New
York-Stony Brook and her colleagues just completed a study of 21 kids with
MS, one of the first studies to focus on the disease in children.
Traditionally, neurologists had been taught that MS strikes adults, most
often women, between the age of 20 and 40. But Krupp's study, sponsored by
the National Multiple Sclerosis Society, suggests MS can launch its attack
very early in life: One child in the study was diagnosed at 6.
Other researchers say they've seen the disease in preschool children.
Brenda Banwell, a neurologist at the Hospital for Sick Children in Toronto,
says her team has treated 34 children with MS: The youngest was 4 and
nearly half were under age 10 when they had their first attack.
Kyle Wallace had his first MS attack at age 4, says his mother, Tammy. She
was getting him ready to go to preschool in the morning when suddenly he
couldn't sit up.
Even today, many doctors don't consider MS a possibility in a child that
young, Banwell says. In fact, Tammy Wallace says she has tried to get help
at the local hospital when Kyle has an attack, only to be told there's no
such thing as pediatric MS.
Now she doesn't even try to get help in their suburb outside Toronto. She
drives the 45 minutes to get to Toronto's Hospital for Sick Kids.
That lack of knowledge about pediatric MS means many kids may not get a
diagnosis right away. Only a few doctors at urban centers in the United
States and Canada specialize in pediatric MS. Krupp's group gets kids from
all over the U.S. Banwell's group in Toronto also sees families from all
over Canada and even some from the U.S.
Suffering in silence
Except for some mild tremors, no one would ever guess that 17-year-old Anna
Peabody has MS. But Peabody, an honors student at Acton-Boxborough Regional
High School in Acton, Mass., has lived through five flare-ups in the
disease since her diagnosis in 2001.
"It's been awful," she says. "I missed three months of school last year."
Peabody made up that time during the summer and went on with her classmates.
But researchers can't tell Peabody what the future might hold. "I worry,"
she says simply. "Will I be able to walk when I am 20?"
Although most children with MS have very mild cases, both Krupp and Banwell
have seen a small group of kids with very aggressive symptoms. Instead of
one or two attacks a year, these children must deal with five or more.
Krupp's study identified five out of 21 cases in which the disease took on
this more severe course. No one really knows whether those kids will go on
to experience progressively worsening disease, but Krupp hopes the arsenal
of new drugs that can push back the malady in adults will work the same way
But the drugs that have fueled a revolution among adults with MS have not
been tested in children. There's no proof that these drugs will work the
same way for kids as young as Kyle Wallace. But doctors like Krupp have no
choice but to use the drugs, especially when faced with a young patient who
has had multiple attacks in a short period.
The hope is that such drugs, especially if started early, will stave off
the worst consequences of the disease. For kids with the worst attacks,
Krupp has even used more than one drug in combination to push the disease
back. That's worked, at least so far.
But even for Krupp, the battle with pediatric MS is a day-by-day struggle
that takes on an air of urgency: Each attack can cause a little more damage
to the brain. Researchers worry that repeated attacks can leave a child
with memory and learning problems. Krupp says about 30 percent of the
children in the study had trouble with cognitive skills, such as
remembering information for a test.
Some adults with MS also have such deficits but often can get around their
problems by relying on their past experience. Unlike adults with MS who
have already completed their academic careers, kids are still trying to lay
down a foundation of knowledge.
And even for children without cognitive damage, the effects of MS can be
devastating. Anna Peabody says that her vision often fades, a problem that
makes reading more than two pages of text almost impossible. But Peabody
refuses to let go of her dream: attending college.
To get there, Peabody says she's had to change her attitude toward the
disease. She says she spent two years denying the existence of her MS, an
effort that exhausted her. Now she accepts the tremor that makes it hard
for her to write a paper.
Watching that struggle can be pure anguish for a parent. "Your job as a
parent is to fix it," her father, George Peabody, says. "And here comes
this disease and we can't make it go away."
But researchers say they're struck by the resiliency that both children and
parents show in the face of the disease.
Tammy Wallace says her son's first attack left the preschooler unable to
walk. She taught him to walk again and told him, "We're going to beat this."
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