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of what would have been, LaBrake has managed to live with what is and what has been -- Matthew has been a quieter, more withdrawn boy with convulsive disorders and a variety of other health issues since soon after Dec. 18, 1997, when Matthew, then 7 years old, was sent home from school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."

Finding out

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 banned.

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 dysfunction.

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 dreading school.

"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.

New advisories

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 agriculture.

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, May 10.

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 smile."

William Brantley may be reached by e-mail at tufeatures@ timesunion.com.

MORE INFORMATION

* For the U.S. Food and Drug Administration's FAQ on lindane shampoo and lotion, visit http://www.fda.gov/cder/drug/infopage/lindane/lindaneQA.htm

* For the U.S. Environmental Protection Agency's fact sheet on lindane, visit http://www.epa.gov/REDs/factsheets/lindane_fs.htm

* For the Centers for Disease Control and Prevention fact sheet on head lice, visit http://www.cdc.gov/ncidod/dpd/parasites/headlice/factsht_head_lice.htm

* For more information about head lice and head lice treatments, visit http://www.nlm.nih.gov/medlineplus/headlice.html

* For more information about head lice and lindane, visit the Web site of the National Pediculosis Association at http://www.headlice.org

* The text of the bill sponsored by Assemblyman Harvey Weisenberg in the state Assembly Health Committee is available at http://www.assembly.state.ny.us/leg/?bn=04162

* For the Web site of Morton Grove Pharmaceuticals, the manufacturer of lindane shampoo, visit http://www.mgp-online.com/

* For the Web site of the Ban Lindane Campaign, vist http://www.pan-uk.org/banlindane/

All Times Union materials copyright 1996-2005, Capital Newspapers Division of The Hearst Corporation, Albany, N.Y.