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 thought.

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 several years.

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.

Discussion:

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 medical care.

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.