THE HAZARDS OF TREATING HEAD LICE
When treating my child for head lice, I never thought about the harm I could be bringing to him. I thought about the anxiety all mothers feel when they find bugs in their child's hair. Never imagined that I might actually be causing Jesse's death. If I had only known or even had a clue. In telling my story, I have decided to remain anonymous because talking about what happened is so difficult. It requires me to confront my demons, and I don't know if I will ever be able to do that. These memories remain vivid nightmares that haunt me through the night. If I think about my role in Jesse's pain and suffering, I'll never make it through the day. I fought so hard to help him live, it's hard to confront the fact that I may have contributed to his death..
The nightmare began in 1984 when there was an outbreak of head lice in the elementary school. Several children were discovered to have head lice, including my second son. Our pediatrician prescribed Kwell ® shampoo never telling me anything other than the fact that it could cause eye or skin irritation. I used the Lindane shampoo on my family, sprayed the house, and had it exterminated. I had a refill of the Lindane so I used it twice that first time on all of my children. I did all of the shampooing myself. About two months later, I watched Jesse playing "Superman" as he jumped from the couch to the love seat. When he was in midair he caught himself in the stomach and appeared to be in a lot of pain. My husband, realizing that I was worried, told me to take him to the emergency room. After being examined, the doctors told me that Jesse had an enlarged spleen which I thought had been caused by his accident.
The doctors decided to do some blood work and found that his lymphocytes and white blood cell count was irregularly high. Not knowing the cause, they decided to keep him overnight to do a liver and spleen scan. The next morning they sent us home with some iron drops for an iron deficiency. When the drops didn't bring his hemoglobin up, they scheduled Jesse for a bone marrow biopsy. By that time, I already suspected the worst. I had researched the possible diagnoses and knew his symptoms pointed to leukemia - acute lymphoblastic leukemia. Jesse was hospitalized for six weeks until he went into remission through chemotherapy. I stayed with him the entire time.
The doctors asked a lot of questions about our background. Had there been a history of leukemia? Was there chemical exposure? There were no questions about pesticides or treatments for head lice so I didn't make the conection. It never crossed my mind. Never. Jesse responded well to chemotherapy. He never looked sick. He was resilient and the entire family pulled for him. Our entire focus was on getting Jesse well. He was only two at the time. Eventually, things got back to normal as Jesse ingested chemotherapy orally once a week for three years. The doctors told us that if he relapsed it would happen within six months after coming off chemotherapy. We were excited to pass the six month and then ninth month marks. We were finally feeling more at ease about his recovery and Jesse's entry into the first grade. Prior to the start of that school year in 1987, I shampooed all of the kid's hair. We always hear about increased cases of head lice when children go back to school and it always strikes a chord with me because I am very hygiene conscious. So I went to the store and brought NIX ® over the counter and used it on all of us - including Jesse. It was nine months after his remission.
About six-to-eight- weeks after, Jesse's cancer came back. The doctors were shocked because his type of cancer had such a high cure rate and he had passed the nine month mark typically indicating a complete recovery. It boggled everyone's mind. Because there was no perfect match for a bone marrow transplant, he was put on a new two year protocol for chemotherapy with new drugs. The doctors believed he had a 70% chance of remission. Jesse did well. When he came off the second protocol he was doing well. About six-to-eight months later I shampooed the kids' hair again for back-to-school. Six-to-seven weeks later Jesse relapsed again. We took him to a prominent medical facility on the East Coast for a bone marrow transplant. My daughter, who was now 16 months old, was an identical genetic match. It was in 1991 and we lived there for long periods of time while the transplant was conducted. Jesse skated through the entire procedure and the doctors felt it went well.
We came home and everyone felt good about things. Jesse had stayed out of school for five months so that his immune system could get back to normal. It was mid-August 1992, and I again shampooed the kids' hair with NIX ® because it was once again back-to-school time. We went on vacation for a week and when we returned we took Jesse in for lab work to find that he had relapsed again and this time he was completely full of leukemia. In a "normal relapse" after a bone marrow transplant experts usually find that they missed some of the original chromosomes from the leukemia patient. They resurface, multiply and divide and create leukemia again. Jesse was one of the twelve documented cases in the world where the patient had relapsed even though the tainted cells had been completely removed. This was a red flag to me. When I received the news, I panicked that my daughter's marrow was leukemic, but the doctors told me her marrow was perfectly clean. Jesse's relapse indicated that there is something in the environmt that may be triggering transformation.
It was at this time that I began to make the connection between Jesse's relapses and the head lice treatments. The week before we went for the lab work, I found two lumps at the back of Jesse's neck. That's when it hit me. Every time I used head lice treatments, Jesse relapsed. I broke into a cold sweat and started to panic. I was eaten up with guilt so I talked to my sister who is a nurse midwife in the area, as well as the doctors at the bone marrow unit. They told me that thousands of children use head lice shampoo each year and that not many get leukemia. But I am close to these people and they know me all too well. Even if they believed my theory, they would never admit it to me because they know it would destroy me. I went to the library to research in the hope that I could prove that my suspicions were wrong. What I found devastated me. I found an EPA pesticide fact sheet which defined Lindane as an isomer of benzene hexachloride. I also found that there was sufficient evidence to support the dangersf exposure to benzene and that many reports associated leukemia with benzene exposure. That explained the Lindane I used, but I also used so much NIX ® after which Jesse consistently went into relapse. So, I looked to find a correlation with NIX ® and Lindane and found an issue of Chemical Engineering News which had an article on the phasing out of chlorinated hydrocarbons. It included a specific chart which included a listing of endocrine disrupters. Synthetic pyrethroids such as Nix ® were included in the chart with different herbicides, fungicides and pesticides. They were all in the same category in terms of their effects. And the negative effects were many.
I had never heard about the National Pediculosis Association or the concept that it teaches. I was born in a time when you pulled out a can of RAID ® or OFF ® spraying it freely to avoid bugs and mosquitoes. I never considered those chemicals as dangerous. They were just part of everyday life. I never considered it until this nightmare happened to me. I now understand that everything is in balance in your body until something knocks that balance starting a chain reaction. Lindane knocked the balance in Jesse's body. I just didn't have a clue. Why didn't I figure it out before it was too late?
Jesse went in for another transplant and he did very well. Soon after he went into seizures and they never understood why. He even pulled out of that. He was amazing. On the 4th of July he had trouble breathing and we took him to the hospital. It was the beginning of the end. The chemotherapy has caused his lungs to harden and he had trouble breathing. They gave him oxygen but he wasn't getting better. They did a lung biopsy and found pneumonitis, a hardening of the lung tissue. He ended up on a respirator. When he began moving air in the bottom part of his lungs, they turned down the respirator but his lung tissue was still sore and fragile. As he took his breath his lung tissue tore. Soon after he had a heart attack. His blood pressure dropped. They put in a pacemaker. finally, his blood pressure was so low that I was told that even if his blood pressure rose, Jesse would never be the same. That was when I knew he was gone. That was when I stopped praying he would live. Jesse died on September 11, 1993.
Jesse was my soul mate. There has never been, and will never be, another person in my life with whom I connected as I did with Jesse. I go through life like a robot now, feeling betrayed and existing only for my other children so they will have a Mom, even if her spirit is broken. I will never be the same. I'll never smile again, not inside anyway. Today, the Leukemia Society's brochure states the only two known causes of leukemia are radiation and benzene. I have learned that there isn't a system that's out there to protect mothers and children like Jesse and me. People need the facts. If I had done this knowing the facts, that would be a different story. But that isn't the case. I believe the lice sprays, the Lindane and the NIX ® contributed to Jesse's illness and death. I feel the same about my husband's leukemia which was diagnosed in 1992. The kind he has takes five-to-ten years to appear, supporting my contentions. He has been given the same prognosis as Jesse. Fearful for where this will all end, I can only hope that my story will help others.
"A Mother's Story" is only one of many tragedies associated with the hazards of treating head lice. Since May 1994, the NPA's National Reporting Registry has received hundreds of adverse reaction reports associated with all the commercially available lice and scabies pesticidal treatment products.
Each year hundreds of thousands of poorly informed parents apply potentially harmful pesticides to their children's scalp or skin to kill head lice or scabies. Education is vital. There are too many families yet to be reached and too many children unnecessarily put at risk. Help us to reach parents before they treat their families.