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Childhood MS: A Silent Epidemic? |
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Written by Kathleen Fackelmann, USA TODAY
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Tuesday, 03 December 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 USA 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 USA 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 suffering from 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 USA
and Canada specialize in pediatric MS. Krupp's group gets kids from all
over the USA. Banwell's group in Toronto also sees families from all
over Canada and even some from the USA.
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 suffer from progressively worsening disease, but Krupp hopes
the arsenal of new drugs that can push back the malady in adults will
work the same way for children.
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% 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 Anna 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," 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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