Quacks scratching their heads

Kids' illnesses baffle researchers

More children then ever are contracting asthma, autism and other
maladies, prompting plans for a major study to find the causes

BY TOM WEBB

ST. PAUL PIONEER PRESS

WASHINGTON - In ever-growing numbers, something seems to be poisoning
America's children.

But what? Rates are soaring for diagnoses of childhood asthma, autism,
allergies and attention deficit hyperactivity disorder.

Scientists don't fully understand what's happening among this
generation of children -- but they're worried by a mounting toll of
sick kids and the growing costs to families, schools, taxpayers and
society.

In Minnesota, autism diagnoses have grown twentyfold in a generation,
making a once-rare condition an unhappy fact of modern life.

Now, the federal government hopes to unravel the mystery by launching
the largest study of children in U.S. history. It's called the
National Children's Study, a two-decade-long effort that would track
100,000 children from the womb into adulthood, examining their genetic
makeup, environment, eating habits, home situations and health. The
cost: $2.7 billion.

"It's big science. It's the same order of magnitude as the human
genome project," said Dr. Peter Scheidt, director of the study's
program office, at the National Institute of Child Health and Human
Development.

The study seeks to answer questions now raging within medical circles,
among educators and in parent groups. Are these conditions caused by
toxins? By genetics? Too much television? Bad diets? Home situations?
Possibly some combination?

It has many supporters, who cite the staggering cost in medical care
and in the effect on families. They welcome the effort to
systematically explore why this is happening. But in Washington, the
competition for research money is always fierce, and even some
children's advocates are unsure the data produced will be worth the
cost.

Mary Powell, director of the Autism Society of Minnesota, would
welcome some answers. In the past 15 years, she has seen an explosion
in the number of Minnesota kids diagnosed with autism-related
conditions, from about 100 children to nearly 3,000. Some of that
growth reflects better diagnosis of autism, but she suspects something
else is happening, too -- with troubling consequences.

The root cause of autism is "the nagging question forever for
parents," Powell said, "because they're always saying, 'If there's
something I could have done.' That's a very profound question in
parents' minds because they never get rid of the feeling that,
somehow, the course of their children's life could have been
different."

For Gretchen Moen of Eagan, Minn., it's asthma that has altered her
family's life.

Her athletic son, Patrick, now 18, has asthma, and she vividly
remembers the early struggles.

"When you have a kid with a chronic illness, it affects everybody in
the family," she said. "He missed probably half of kindergarten, and
half of first grade" because he was too sick to attend school. "He was
the kind of kid who'd get a cold, and it would last him the entire
winter."

Her son's story does have a happy ending: with determination,
medication and some allowances, Patrick has become a star athlete at
St. Thomas Academy.

But his mother remembers the worry, too.

"There were many, many nights when you'd stay up all night listening
to your child breathe, just to make sure he keeps breathing."

UNEXPLAINED INCREASE

Despite much medical detective work, scientists still do not fully
understand the soaring rates for childhood asthma, allergies,
attention deficit hyperactivity disorder and several other health
conditions. Even childhood obesity, although better-understood, has
elements that remain puzzling.

"They're all conditions that are pretty common in children, and are
increasing," Scheidt said, "and clearly there are multiple factors
that are contributing to these conditions -- genetic predisposition,
behavior, environmental exposures, the way they're managed."

Minnesota school districts large and small are struggling to meet the
ever-rising demand for expensive services.

Ann Hoxie has been a school nurse in the St. Paul public schools for
20 years. Like many frontline professionals, she's seeing much more
childhood asthma. In St. Paul, it afflicts at least 8 percent of the
students. In Minneapolis, it's 12 percent.

"Last fall was a bad allergy season, and we had lots of kids having
problems with asthma, and a fair number of 911 calls, just because we
didn't have the right meds for kids. We didn't see nearly so much of
that 20 years ago," said Hoxie, the district's administrator for
student wellness. "We had a student die of asthma last year. Students
don't die at school! But we did have that happen."

The children's study won't focus only on those problems. It will
examine many aspects of child development -- including family
structure, ethnicity, prenatal care and family income. The hoped-for
answers run the gamut, too, with researchers craving insights into the
causes of cerebral palsy, schizophrenia and other conditions.

Still, the urgency is being driven by the unexplained spike in
childhood conditions. Dr. Duane Alexander, director of the National
Institute of Child Health and Human Development, last month told a
Casey Journalism Center seminar that if only some answers emerge, the
study's cost will be more than covered.

The study was authorized by Congress back in 2000, but the tough part
will be finding the money in the federal budget.

The real money crunch will come in a year, maybe two, Scheidt said,
when hundreds of millions of dollars will be needed to start
recruiting, then interviewing and tracking, 100,000 parents.

UNCERTAIN OUTCOME

Dr. Sheldon Berkowitz, medical director at Children's Hospitals and
Clinics in Minneapolis, notes that studies on this scale are unique
and don't always follow predictable lines, so he's a bit wary about
the talk of finding root causes.

"The grand scale of it is what's so overwhelming," Berkowitz said of
the study. "My guess is that, with a study like this, you're going to
have a whole lot of things falling out of this that you never really
expected... and you may be disappointed on stuff that you hoped to
get."

Berkowitz wondered if a smaller study might be adequate, noting, "I
wonder if$2.7 billion is best spent in this way, when there's all
these immediate pressing needs for kids."

Scheidt explained that with 100,000 children, researchers will be able
to examine large subgroups to compare and contrast.

If the study pins down some hard-to-define problems, that may be
useful, too. Thomas Dickhudt, superintendent of the Chisago Lakes
school district, knows that more kids are being diagnosed with autism
and attention deficit hyperactivity disorder, but he wonders: Are
there more sick kids, or just changes in how kids are diagnosed?
"That's the part I'm having trouble with," he said.

The U.S. Department of Education tracks soaring rates of attention
deficit hyperactivity disorder. A decade ago, 83,000 U.S. students
were counted in a broad category that included the syndrome. Last
year, that had increased nearly fivefold.

Moen is active in the Minnesota Asthma Coalition, where each year she
sees more and more children with asthma -- reflecting better
diagnosis, she says, but perhaps something more.

She would welcome answers to fears that bedevil a million parents.

"Are we doing something to our children, so to speak, that has caused
this? I think that's what everybody wants to know."