Stacey's Story:
 I worked in our local hospital in 1984.  There had been a patient with scabies that infected much of the floor I worked on.  Although I did not show signs of the infection I was ordered to Kwell (lindane) my entire family; my husband, my 2 year old daughter, and myself.

This was in January.  In March of the same year, she had developed a rash on her belly.  Our family doctor didn't know what it was so he sent us to a dermatologist who said it was scabies.  I told him about the outbreak 2 months earlier.  He believed it had laid dormant in her and that she had caught it from me.  He recommended that all of us use Kwell again.

On April 13 she was hospitalized with "severe anemia and left hip joint pain".  The next day she was transferred to John Hopkins Hospital in Baltimore where we lived for the next 8 weeks.  It took her a while but she eventually responded to the chemotherapy.  She had several set backs along the way.  Fortunately, Stacey went into remission and has been fine since then.  She is now a healthy college student.

My mother kept telling me back in 1984 that the Kwell had caused her cancer but I didn't pay it much attention.  After reading about Jesse and the other children I'm starting to suspect my mother was right.  It's sad to think how many other children have been affected by problems like this.

 - Chris C.

Matthew's Story:
I will start at the beginning, to relive it is so painful and with his continuing health problems is so much worse.

I'll begin by telling you a little about my son Matthew and his life before lindane. Matthew was a completely healthy, happy energetic little boy. He had a small speech delay, and his speech therapist was amazed at his ability to remember the words to entire books for a child just 3 years old. Matthew loved to watch sports and knew all the players names, numbers and statistics. He had such a loving, sweet disposition and as I'm writing this the tears flow, for so much has changed.
In December 1997, when Matthew was 7, I received a call from the school nurse. He had head lice and I was to immediately pick him up from school. I explained how he was sensitive to medications, and the nurse suggested I call his pediatrician's office . I called and got a prescription for lindane, which I immediately purchased. When I got home I realized there were no directions on the bottle. I called the office and was told to put it on my son for at least 4 minutes and then use a lice comb. I used it again the next morning and hoped that all lice were gone so he could return to school.
A few weeks later I again received a call from the school... head lice again. Either the medication didn't work, or he was somehow reinfected, I wasn't sure which. This process repeated itself over several months. I had been given such large bottle of lindane that I never ran out, so I kept using it each time he was sent home.
By the end of January 1998 I started noticing changes in my son. His eyes would blink rapidly and he kept rubbing them. His doctor said it was conjunctivitis (which I questioned because his eyes were not red at all) and had me treat him with eye drops, which didn't help at all. The blinking became worse and now his eyes would roll up into his head. The doctor now said it could be an allergy and gave another medication which didn't help either. My son was sent to two eye specialists during this time. The first said his eyes were fine, the second said it was neurological and he suggested that Matthew see a neurologist.
Matthew was then diagnosed with childhood tics. An EEG was done which showed seizure activity. The neurologist said we could try a seizure medicine, but he thought his symptoms would clear up in the next few months.
Things only got worse. Matthew's arms would jerk, his eyes blinked and rolled more. He started "whining" a high pitched sound. He didn't like to be held or hugged as much, and didn't enjoy school anymore.
In March of 1998 I saw a news report on the dangers of lindane, and how it causes neurological damage. I suspected right away that this is what happened to my son.
He lost interest in the things that he used to enjoy. He had started playing Pop Warner football, but one day the coach took him off the field because he had trouble breathing and kept clearing his throat.
Matthew has had 4 EEGs since his first neurologist visit with various results: an epileptic encephalopathy, features of benign Rolandic epilepsy, acquired epileptic aphasia, absence seizures, underlying cortical irritability and diffuse cerebral dysfunction.
He was officially diagnosed with Tourette's Syndrome and anxiety disorder. I very much question the Tourette's myself and wonder if all his blinking is related to the abnormalities shown on his EEGs. He also has episodes of tachycardia where he has to sit because his heart races. He constantly complains of stomach aches.
He's been complaining of his legs hurting, but he also has had two pretty bad nose-bleeds in the past few months. The last occurred the other night and I took him to the ER. I requested blood work which the doctor felt no need for, so I will be following up with his pediatrician. I'm so scared something else is now going on.
I think of the past 5 years and call it a 'nightmare'. But then I realize it's worse than that because you eventually wake up from a nightmare.
I wonder what life would have been like for my son if I never used lindane on him. I'm sure he would be the healthy, happy, joyful and adventurous person he was meant to be.
The EPA, FDA, other government officials and medical community didn't care enough to protect my son.
But I care, and I love my son so very much. I will do all that I can to help him, but I don't know where to start. All I can do now is love him.
I just want to say to the other parents whose children have been damaged by lindane that my heart goes out to you. You and your children will be in my thoughts and prayers.

- Pamela L.