On the topic of Lice

[Guest guest]

I don't know the person who wrote this but it seems very important for the

message to get out when dealing with lice.....

 

Dorothy

******************************

 

PLEASE contact your schools before you receive the letter saying there's been an

outbreak and the moms have already headed for the Nix.....After you read this

story and realize how important it is that we let people know that there is a

safer, more effective solution.

 

Jesse's Story

 

When treating my child for head lice, I never thought about the harm I could be

bringing him. I thought about the anxiety all mothers feel when they find bugs

in their child's hair. I 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 keep him

alive, it's hard to confront the fact that I may have contributed to his death.

 

The nightmare began in 1984 when my second son had an outbreak of head lice in

elementary school. Several children were discovered to have head lice, including

my son. Our paediatrician prescribed Kwell shampoo never telling me anything

other than the fact that it could cause eye or skin irritation. I used

thelindane-based shampoo on my family, sprayed the house, and had it

exterminated. I had a refill of the Kwell so I used it twice that first time on

all of my children. I did all 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 mid-air 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 haemoglobin 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

pesticide exposure so I didn't make the connection. 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 2 1/2 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 kids' hair. I am very hygiene conscious. I went to the store and bought

NIX over the counter and used it on all of my children -- 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 miraculously an

identical genetic match. In 1991 we rented an apartment in the East and lived

there for long periods of time while the transplants were 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 to get back to normal. It was

mid-August 1993, and I again shampooed the kids' hair with NIX. 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

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 leukemia, but the

doctors told me her marrow was perfectly clean. Jesse's relapse indicated that

there is something in the environment that may be triggering a transformation.

 

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 dangers of exposure to benzene

and reports associating leukemia with benzene. That explained the lindane I

used, but I also used lice sprays and so much NIX. 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 NPA or the concept it teaches. I was born in a time

when you freely sprayed a can of RAID or OFF to avoid bugs and mosquitoes. I

never considered those chemicals as dangerous. They were just part of everyday

life. I never considered it a risk 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? Why didn't somebody reach me?

 

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. The chemotherapy (more poison) had 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.

 

Today, the Leukemia Society's brochure states the only two known causes of

leukemia are radiation and benzene. 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 other chemical exposures I subjected Jesse to did similar harm. My

husband was also diagnosed with leukemia in 1992. The kind he has takes

five-to-ten years to appear. He's been given the same prognosis as Jesse.

 

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 him. I go through life like a

robot now, 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.

 

Read Jessee's story and see his photo

http://www.headlice.org/jesseproject/jesse.htm

 

Read other children's stories

http://www.headlice.org/jesseproject/others.htm

 

What is Lindane?

http://www.headlice.org/faq/treatments/whatslindane.htm

 

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