On August 5, 1982, I used Kwell shampoo on my son
Christopher (who had just turned 8 years old on July 25th) to treat him for head
lice. I used it as prescribed, putting it on his dry head for four minutes. I
also treated my 10 year old daughter at the same time. They both had head lice.
I also sprayed a head lice spray called RID, over everything in my house
including the furniture, beds, carpeting and more.
I was pregnant with my fourth child at the time that I treated everyone. I
treated the two kids, not myself, and did not wear gloves. The pediatrician
called in one prescription and when I went to pick up the prescription I sent
the two kids in the house to wet their hair figuring when I came back I could
shampoo it. When I read the directions it said to apply to dry hair.
Christopher’s hair had dried right away because it was August and his hair was
short. My daughter however had very long and thick hair so I went back to get
another prescription for my daughter because it was clear that one bottle
wouldn’t be enough. I got the information fact sheet at the second trip to the
pharmacy. After using the shampoo we didn’t notice any abnormal behavior.
A year and a half later my son Christopher had his first seizure. After his
first noticeable seizure we took him to Children’s Hospital in Washington, D.C.
to the Neurology Department. We did a case history on him and realized that a
lot of the things we had been doing over the past year that we thought were
normal behaviors for an 8 or 9 year old, were not. Some of these behaviors
consisted of stuttering or being in a daze with involuntary mouth movements. I
found out that these were actually petite mal seizures.
I never associated any of this with the use of the
Kwell shampoo and therefore Christopher may have had symptoms right after the
treatment that we never noticed.
I remember going head to head with his teacher over his daydreaming in school. I
thought she wasn’t making life interesting enough for him so he was bored, I
After his first seizure in February, 1984 the neurologist said it would probably
never happen again. However, two weeks later it happened again but this time he
didn’t come out of it on his own. We had to take him to the hospital where he
stayed for a couple of days and was put on phenobarb (similar to a sedative or
Valium). This was when he began taking medicine to control the seizure activity.
Numerous EEGs were taken and were always what his doctor termed characteristic
of epilepsy but not diagnostic. Some of his EEGs were even normal. He also had
numerous CAT scans that were normal. One of the first MRI’s ever done on
Christopher was at NIH, which showed nothing abnormal. Christopher continued to
be treated with tegretol, valpuric acid and dilantin (anti-seizure meds) for
Christopher had another MRI done in 1990, which was also normal. However, at
that time Christopher’s seizures were becoming more common and severe which
would involve drooling and facial twitching, with arm and full left side
involvement. The doctor stated that the only explanation for this was poor
compliance of medications although Christopher always insisted that he took his
medication reliably. The doctor remained optimistic that these seizures could be
brought under control, but that it would be a matter of good compliance and
pushing the medication to its maximal effectiveness.
Christopher did well on the drug management. He did have occasions when he
"broke through" his medication with involuntary mouth movements, slurred speech
and things like that. This was thought to be related to either not taking his
medicine or that the dose needed to be adjusted. A couple of times when he got
older I gave him the responsibility of taking his own medicine, because he was
aware of the consequences from not taking it. He had approximately ten full
blown seizures while on the medication but his medication level would be low
when he would have them.
We did not restrict Christopher from any activities. We watched him very closely
and felt as though he was well taken care of. I can’t remember if he had any
joint aches but he lifted weights, played soccer and roller bladed.
One time he was in the emergency room holding our baby, John and he began having
a seizure. I tried to take John from him but Christopher just looked at me and
said that he wanted to hold him or something to that effect and then the seizure
kind of subsided.
Most of his seizures would occur in the middle of the night. I would wake up and
wake up my husband, Jack. We would hear the swooshing and gargling in his mouth.
Jack would go to him and I would call 911. It would go down one side of his
body. The very first seizure woke him. He would get out of bed and go to the
bathroom to see if that was what was happening. If he was in a dead sleep the
activity wouldn’t wake him up until it woke us up. If he was in a lighter sleep
he could catch it himself.
After I called 911, I would go in with him and Jack and I would talk to him. He
knew exactly what I was saying all the time. As long as I stayed calm he would
be okay until the ambulance came. If I got excited he got worse. He couldn’t
talk because of the activity in his mouth and usually one side would go limp.
There were just a couple of times when he would be unconscious. Most of the time
he was fully conscious and very strong.
The last seizure Christopher had was a small seizure around October, 1992. He
had gone to a haunted house with some friends. The people he was with knew that
he had a seizure disorder and that he had a "breaking through". A good friend of
his asked him if he had a seizure. He said yes but that he was okay. One of the
parents even checked him and he was okay. He saw his neurologist that December.
Christopher passed away on April 27, 1993 from what his autopsy report said was
a sudden and unexplained death. He died in his sleep. His autopsy report was
perfect and there was no evidence of a seizure or anything else. He was 6’4" and
weighted 170 pounds when he died. This crippled our family. We had five
children. He was the essence of our family unit.
The week before Chris died, one of the kids
came home with lice. I treated them with the RID family pack. Two bottles in
each box that I can remember. They had rebates and I sent in for the rebates. I
saw bugs so I sprayed everything including Christopher’s bed. I washed all of
the pillows and pillow cases and 2 sofa beds and sheets. Chris had an allergy to
dust that was diagnosed in 1987 or 1988 so he had one of those rubberized covers
for his pillow and mattress and box springs. So we took that off and washed it
and sprayed the mattress and washed his pillow, sprayed his carpet and stripped
his whole room washing the curtains and spraying everything.
Nobody asked me anything about using all these products when Chris died. This
was the Wednesday before the Tuesday that he died. After he died I read an
article that none of these products should be used on kids with medical
problems. I have four sisters who are hairdressers and they told me about this
article. I believe that Christopher was in perfect health up until the time he
was treated for head lice the first time. We had no family history of seizures.
It is possible that Christopher was chemically kindled when he was first treated
with lindane (Kwell) in 1982. The fact that Christopher was treated with lindane
was noted only in the pediatrician’s record and never again referred to or
considered in medical care for his subsequent seizures. Christopher’s mother did
take him to an allergist after seizures began and he tested positive for
pyrethrum but this was not mentioned again anywhere in his chart. This is an
important point because the "environmental" sprays his mother used at the same
time he was treated with lindane did contain pyrethrins.
As a young man, Christopher had numerous other chemical exposures in what
otherwise would be considered the living experiences of a normal young person
growing up in America. His family owned a general store where they also pumped
gas and sold plantings and pesticides for gardening. He spent some of his
winters swimming in and maintaining a chlorinated indoor pool. Christopher also sold Christmas
trees (treated with lindane) from November through the holiday season.
From his medical record, it appears that many of his noticeable seizures
occurred during the months of February, following exposures to Christmas trees
treated with lindane, although there is no mention of a possible correlation of
time in his records. Chris’ father said that he had rashes on his hands when he
worked with the trees. He had ongoing bouts with sore throats and tonsillitis
and eventually had his tonsils removed. The physician who "retired" on
Christopher’s tonsils, noted that they won the prize. In all his years of
practice he had never seen tonsils so large. One would be remiss not to mention
that with his tonsillectomy (and foot surgery noted in his records), Chris had
additional chemical exposures via general anesthesia.
Noting something disconcerting about the high percentages of teenagers that the
Epilepsy Society considers being non-compliant, Chris had a very difficult time
convincing his doctor that he was compliant with his anti-seizure medication. It
is fair that there were probably times when he failed to take his meds. However,
his mother noted in her conversations that Christopher did have seizures at
times when he swore that he was compliant. His record does not reflect
consideration of anything that might otherwise have altered his Dilantin levels,
such as other chemical exposures. In 1990 there was an occasion noted in the
record where his neurologist acknowledged something unusual in terms of his
Dilantin levels dramatically changing. This was a unique incident since his
blood had just been measured at acceptable levels. However, this was not
followed up. There are a couple of articles about Dilantin displacing lindane.
Why did this doctor think non-compliance was the only explanation?
If Christopher was kindled, it would seem that there was really no place for him
to turn. The last week of his life had many chemical insults. There is no
evidence that he was instructed to avoid chemicals in any way. He was sleeping on a mattress that along with his room had recently been
sprayed with chemicals included in the pesticide spray. At the same time his
room was sprayed, he had shampooed the hairy parts of his body with permethrin
under the arms and genital area.
Christopher’s mother was never asked any questions, when he was rushed to the
hospital, and Christopher’s autopsy read that he had known seizure disorder and
died as a "sudden unexplained death". After reading articles about other
children's experiences she began to understand that Christopher had a medical
history far different than that which had been considered during his years of
Christopher’s mother tried to share some of this information with Christopher’s
last neurologist who, in an apparent attempt to dismiss her concerns, suggested
that she needed counseling in dealing with her grief. The pathologist who
performed the autopsy was also recently contacted and he has reopened the files
to begin reconsidering this young man’s untimely and tragic death.
There could have been one or many causes for Christopher’s death. It is doubtful
anything will ever be proven one way or the other. What we know for certain is
that nobody considered any of Christopher’s chemical exposures while caring for
his seizures. The fact that his seizures began after he had been treated with
lindane was never brought up and was not kept with his medical records as he was
referred from one expert to another.