By Paula Lyons
For years it was the most commonly prescribed
treatment for two of the most vexing and
distasteful problems of childhood, head lice and
scabies. The treatments most recognizable
brand name has been Kwell, though it is no
longer manufactured under that name. Generically,
it is known as lindane. And though it comes in
lotion and shampoo form, lindane is actually a
very strong pesticide.
Ladies Home Journal
But parents rarely are
aware of this, and they can learn too late that
lindane can have the same effect on their
children that it has on the insects they carry:
In other words, it can attack and permanently
damage the central nervous system.
On June 10, 1993, Jean Nabors*, of Boise,
Idaho, had just gotten her husband and kids off
for the day when she sat down with a cup of
coffee to watch Good Morning America. She
was soon caught up in a report that I, then GMAs
consumer editor, was presenting that morning.
It was the story of a young mother, Rosa
Santiago, of Lawrence, Massachusetts, whose
fourteen-month-old son had suffered brain damage,
allegedly after she applied a prescribed lotion
to treat a body rash her doctor said was caused
by scabies, a microscopic insect that burrows
under and irritates the skin.
The doctor had prescribed two ounces of the
medicine, but the pharmacist gave Rosa four
ounces by mistake, she says. The pharmacist did
not, Rosa says, give her any written instructions.
Her doctor had told her to apply the lotion at
night and wash it off in the morning. Neither the
doctor nor the pharmacist made it sufficiently
clear to her that she was to use the lotion just
once, Rosa says. She thought she was supposed to
use the lotion until the rash was gone or the
lotion was used up, so she applied it every night
for a week. On the eighth day, her son, José,
had multiple convulsions. Jean Nabors sat in her
Idaho home wide-eyed as she watched on the
television as the now seven-year-old José
stumbled and fell while playing, battling the
brain injury and permanent retardation that
allegedly resulted from applying a simple "cure"
for a common condition.
And as soon as she heard the medicines
name lindane Jean began to cry.
"Oh, my God," she said. "Thats
it. Thats what happened to us. Thats
what did this to my son."
Jeans adopted son, Scott,* now eight,
was treated with lindane for scabies at age two.
Like Rosa, Jean received few instructions and was
assured by her doctor that lindane was safe.
"Ive used it for years," the
doctor said. So Jean applied it at night, as she
was instructed, following her sons bath.
Since it was August and hot, she put Scott to bed
in just a diaper and a T-shirt. She noticed Scott
licking his arm, scratching and putting his hands
in his mouth, but she didnt worry since the
doctor had said the lotion was safe.
Even the family dog, a six-year-old black Lab,
seemed attracted to the lindane. Jean caught him
licking Scotts legs. After the first
application, Scotts rash persisted.
Following the doctors advice, Jean waited
ten days and treated him once again with lindane.
The dog had a seizure. Jean and her husband, Paul,
rushed the animal to the vet and wondered what
had happened; now they believe the incident was
caused by the dog licking Scott again.
In another ten days, Scott received a third
application of lindane. The next day, he had what
Jean now knows was a mild seizure. He was glassy-eyed,
lethargic, nonresponsive. Three days later, his
eyes rolled back, his lips turned blue, his body
stiffened, he convulsed and lost consciousness.
On the way to the emergency room, he stopped
breathing. He was revived, but his seizures
continued. They persist to this day.
"The reason I cried when I saw your story
is that boys problems are so much like
Scotts," Jean told me. Scott now has
cerebral palsy, brain damage, and a damaged left
foot, leg, arm and hand. He cant jump or
skip. he cant write his name. His language
development is slow. He has also been diagnosed
with Attention Deficit Disorder. He is on
medication in an attempt to control his seizures,
though nothing really does.
Both of these mothers believed that lindane
was a medicated lotion that would soothe their
childrens itch and irritation. The mothers
say that no one told them, nor did the labeling
make sufficiently clear, that lindane is a
pesticide, a poison that kills insects by
attacking their central nervous system. Doctors
and pharmacists have, however, known this for
"I think lindane should be thrown in the
trash somewhere. Theyve hurt my son forever,
and it wasnt even necessary," Jean
Jean is not the only mother I heard from after
that June report. My office, the office of the
National Pediculosis Association (a nonprofit
group formed to educate parents about the
prevention and proper treatment of head lice),
and the office of the Boston attorney who
represented Rosa Santiago were flooded with calls,
many from parents who believe that their children,
too, had been harmed.
And Jean is right. It isnt necessary to
use lindane to treat scabies or lice. These days,
there are effective alternatives that must be
used carefully. But they arent as toxic as
So, why is this substance still on the market?
Why has its labeling not been clearer? Why do
parents almost never know what it can do? Why
arent doctors more careful?
Barre-National, Inc., the largest manufacturer
of generic lindane, says it has updated
instructions on both shampoo and lotion to make
errors in use less likely. "The importance
of the doctor-patient relationship," the
company said in a prepared statement, "gives
further assurance that the product will be used
safely and effectively."
NOT SAFE AND EFFECTIVE
To a mother like Jean Nabors, that response is
painfully inadequate. Jeans heartbreak
began in 1988, after she adopted Scott from South
America. Three doctors examined him, found him
weakened by malnourishment and suffering from a
cold and an ear infection, but all pronounced him
otherwise healthy, happy, curious and intelligent.
But a diagnosis of scabies came about three
weeks after Scott entered the United States.
"I noticed him itching and scratching; he
looked so uncomfortable," Jean said. "Some
of the rash had turned into open sores."
Medical reference books found in every doctors
office are quite clear in warning against the use
of lindane on open wounds. They are also clear
about the consequences of misuse of the product.
Lindane "penetrates the human skin and has
the potential for central nervous system toxicity,"
says one. It goes on to say that seizures are a
possible outcome and that the "potential
toxic effects of topically applied lindane are
greater in the young."
"How could my doctor have told me it was
safe?" asks Jean.
Part of the reason has to be because the
federal Food and Drug Administration (FDA),
despite years of controversy over lindanes
potential toxic effects, especially on children,
continues to call the substance "safe and
effective when used as directed."
Yet reports of seizures following its use as a
treatment for scabies and head lice have been
surfacing in significant numbers for decades. The
FDA, which regulates lindane as a medicine, held
hearings and ruled that the industry should
provide written instructions to patients when
lindane products are dispensed.
But the first FDA-approved patient
instructions failed to mention that lindane was
dangerous, poisonous or toxic. In 1983, when
reports of seizures and other neurological damage
persisted, Public Citizen, a consumer group
founded by Ralph Nader, petitioned the FDA to ban
all medicines containing lindane. Today, eleven
years later, the group is outraged that lindane
is still being used.
"We have recently looked at reports filed
with the FDA, and there are almost fifty reports
of convulsions, half of which are in children
under the age of ten, from using products
containing lindane," says Sidney Wolfe, M.D.,
director of Public Citizens Health Resource
Group. "Generally, fewer than one in ten
adverse drug reactions gets reported to the FDA.
The fact that there are forty-seven cases of
convulsions reported means that there are
probably hundreds of cases."
But to the FDA, these numbers apparently do
not suggest a need for anything more than
superficial changes. Murray M. Lumpkin, M.D.,
deputy director for review management at the FDAs
Center for Drug Evaluation and Research, says
that the agencys current position "is
that lindane is safe and effective when used as
directed. Last May , we did ask our
Dermatological Advisory Committee if this product
should be pulled from the market. They voted
unanimously not to pull it." The FDA
believes that efforts should focus on educating
users, not on banning lindane."
The agencys newest patient instructions,
approved just last year, do, for the first time
since reports of convulsions surfaced in the 1950s,
finally state unequivocally that lindane can
"be poisonous if misused." (However, a
spot check of lindane products by Ladies
Home Journal showed that not every product
was so labeled.)
Such labeling comes too late, though, for one
family. A New Mexico attorney represented the
family of a healthy nine-year-old who was treated
for head lice in 1986 upon the recommendation of
their physician. The child did not have head lice;
her baby brother did, but treatment for the whole
family was recommended. The child used the
shampoo in the shower, followed by a cream rinse,
and suffered a seizure just hours after the one
application. She suffers from brain damage and
permanent seizure disorder to this day. Experts
say a hot shower and the use of conditioner or
cream rinse can increase the absorption of
Lindane does not always cause permanent harm.
At least Nancy Stivers, of Lubbock, Texas, hopes
that will be the case with her daughter, Jennifer.
Now thirteen, Jennifer was prescribed lindane for
scabies in November 1992. "The doctor wasnt
convinced it was scabies but said, Lets
treat it as if it is," Nancy explained.
The doctor told Nancy to use it two nights in a
row, she said; Nancy remembers the pharmacist
telling her he had questioned the doctor because
the usual recommendation was one treatment, a
weeks wait and retreatment if necessary.
Nancy did what the doctor said.
Six months later, the school nurse said
Jennifer had scabies again diagnosis that
was later questioned. Another doctor refilled the
lindane prescription by phone, and, at the urging
of a family friend who was a nurse, Jennifer used
it three nights in a row. After the third
application, Jennifer suffered seizures
multiple ones for several days. She and her
mother believed they were caused by lindane. But
they appear to have stopped now, and Jennifer
It is important to note that the use of
lindane has fallen in recent years. Many
physicians years ago gave up using it on children
under five, or wouldnt dream of prescribing
it without giving detailed, written instructions.
There are now less-toxic alternatives to treat
both scabies and head lice. In fact, increasing
competition from other products is the only
reason that Reed and Carnrick, originator of the
brand-name lindane product Kwell, has stopped
Says Lumpkin, "There are alternatives for
the treatment of both scabies and head lice. We
believe that parents should try the safer
products first." But families on Medicaid do
not always have the option of trying the safer
treatment first, unless they pay for it
themselves, because prescription drugs may be the
only medicaid-reimbursable treatment; policies
vary from state to state. Robert Wardwell,
director of the division of coverage policy of
the Health Care Financing Administrations
Medicaid Bureau, suggests that families on
medicaid who want to avoid lindane should have
their doctors prescribe an over-the-counter
alternative and see if that will be covered. But
that is a piecemeal remedy, effective only when
families are persistent and skilled enough to
argue their case with officials who are willing
And, says Deborah Altschuler, president of the
National Pediculosis Association (NPA), it is not
enough. Instead, she says, "The NPA wants
the government to take some steps to make it
impossible for another family to suffer the
negative consequences of this chemical. Whether
that means the strictest possible control of it
or the banning of it, I dont know. My job
is to report to the government and to the public
that we are averaging fifty calls a day here,
from people who dont know how to use
lindane or other treatments. Its got to
*name has been changed
Printed with the permission of Paula Lyons
© Ladies Home Journal