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
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
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
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
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
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.