|In the world of what would have
been, her son Matthew would have started playing football this past
year. His childhood dream was to play for the Dallas Cowboys.
Pamela LaBrake of Schenectady can picture in that world of what
would have been how Matthew, who recently turned 15, would still be
an outgoing, confident, happy kid with lots of friends and a smile
big enough to make you do the same.
Instead of what would have been, LaBrake has managed to live with
what is and what has been -- Matthew has been a quieter, more
withdrawn boy with convulsive disorders and a variety of other
health issues since soon after Dec. 18, 1997, when Matthew, then 7
years old, was sent home from school with head lice.
"I called (the doctor) and told them that he was 7," said LaBrake,
recently, sitting in the den of her mother's house in Albany. "They
prescribed a lindane shampoo. I picked it up within an hour."
Lindane is the common name for an organochloride pesticide known
as gamma benzene hexachloride. Since the 1940s, it has been used in
the United States as an agricultural insecticide and as a chemical
treatment for lice and scabies.
In shampoo form, lindane is generally meant to be used only once,
in a very methodical way, as a "second-line" treatment.
LaBrake found this out later. She said that because she hadn't
received any explicit special instructions for using lindane, she
figured she'd use it on Matthew just like any other shampoo. That's
what she did.
The problems started a few weeks later. Matthew's eyes were
swollen and red. They rolled around in his head. He was struck by
twitches and spasms.
The first doctor who saw Matthew, in early January 1998, found a
scraped cornea and diagnosed him with conjunctivitis.
At that point, LaBrake hadn't considered a correlation between
Matthew's problems and the lindane shampoo. That changed a couple of
months later, when she saw a television news report about the
possible side effects of lindane.
"It was like they were describing Matthew," said LaBrake. "Oh my
god, I knew right away."
From that point on, LaBrake began to find out everything she
could about lindane. She filled notebooks and folders with
information about the pesticide.
She got in touch with doctors, pharmacies, legislators, other
parents, the U.S. Food and Drug Administration, the Environmental
Protection Agency and organizations trying to get the substance
She filed Freedom of Information requests, posted letters on
Internet message boards and watched, guilty and helpless, as
Matthew's condition immediately worsened, then refused to go away.
In September 1998, nine months after LaBrake used the lindane, a
neurologist saw Matthew and concluded in his report that the boy's
symptoms were "consistent with the syndrome of acquired epileptic
aphasia," a convulsive condition. Later, he would receive other
diagnoses: epileptic encephalopathy, cortical irritability, cerebral
Going through changes
After a while, it didn't matter to LaBrake what they called it.
The worst part was watching her son and realizing he might not ever
be the same again.
He withdrew from other kids. He quit playing sports. He began
"He remembers how he was before," said LaBrake. "When he was
younger, he used to say, 'Why did you use that shampoo on me?' He
doesn't say that anymore."
Although LaBrake is not taking any legal action regarding her own
son's case, she has spent the past eight years actively seeking a
ban on lindane.
Today, a child is less likely to receive a lindane shampoo
prescription to treat head lice.
A little more than two years ago, the Food and Drug
Administration issued a public health advisory concerning the use of
lindane shampoo and lotion. It required lindane shampoo and lotion
bottles to come with a "black box" warning highlighting the risks
associated with the products.
"While FDA believes that the benefits of lindane outweigh the
risks when used as directed, given the potential for neurotoxicity,
patients should only be treated with these medications if other
treatments are not tolerable or other approved therapies have
failed," the March 28, 2003, advisory stated.
In addition to stressing the use of lindane as a "second-line
therapy," in essence a fall-back option when nothing else has
worked, the FDA advised caution in using lindane on anyone weighing
less than 110 pounds. "These warnings," the advisory read, "are
based on reports to the FDA's voluntary reporting system, which
described approximately one half of reported adverse events occurred
in pediatric patients."
The advisory also stressed that each new prescription of lindane
shampoo or lotion must be accompanied by a "Medication Guide"
spelling out the instructions for use and the information about the
possible side effects of lindane.
For some, this warning isn't enough.
In 2000, California became the first and, so far, only state to
ban the use or sale of lice and scabies treatments using lindane.
That bill cited not only the health concerns associated with the
direct use of lindane but also the toxic polluting power of lindane
being flushed into the water system because it is still used in
A similar bill has been passed by the state House of
Representatives in Illinois. A hearing on the bill is scheduled to
take place Wednesday in the Health and Human Services Committee of
that state's Senate.
The state of law
In New York, Assemblyman Harvey Weisenberg of Long Beach has
sponsored a bill to ban lindane. He said he first became aware of
lindane because a constituent suffered brain damage after using it.
"The evidence has proven that lindane is not only detrimental to
the person who's using this product but also to the environment,"
said Weisenberg. "It has a warning on it (to) not use it on animals.
If we don't use it on animals, why the hell would we use it on a
child? It just doesn't make any sense."
The bill has been put on the committee's agenda for next Tuesday,
A number of public interest groups, including the Citizens'
Environmental Coalition, the New York Public Interest Research
Group, Physicians for Social Responsibility and the Healthy Schools
Network have voiced strong support for the ban on lindane.
The ban seems to make sense, said Erin Cinelli, a pharmacist and
adjunct faculty member in the department of pharmacy practice at the
Albany College of Pharmacy. "You don't really see it too much
anymore, anyway. I've only dispensed it once," said Cinelli.
"There are the over-the-counter (head lice treatments), and I'm a
big advocate of doing all the manual things, like combing."
Upon hearing last week that the lindane bill was scheduled to be
on the agenda soon, LaBrake was excited.
"I didn't want to get Matthew's hopes up, so I explained to him
that it has to go through all these different committees and who
knows what will happen," said LaBrake. "I told him that it was a
good first step, though. He doesn't talk much, so he didn't say
anything. But when I told him, he did sort of have this little
William Brantley may be reached by e-mail at tufeatures@
* For the U.S. Food and Drug Administration's FAQ on lindane
shampoo and lotion, visit
* For the U.S. Environmental Protection Agency's fact sheet on
* For the Centers for Disease Control and Prevention fact sheet
on head lice, visit
* For more information about head lice and head lice treatments,
* For more information about head lice and lindane, visit the Web
site of the National Pediculosis Association at
* The text of the bill sponsored by Assemblyman Harvey Weisenberg
in the state Assembly Health Committee is available at
* For the Web site of Morton Grove Pharmaceuticals, the
manufacturer of lindane shampoo, visit
* For the Web site of the Ban Lindane Campaign, vist