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Heather's Story

My daughter Heather had contracted head lice and it was very difficult to eradicate.  I may have used the product incorrectly--I don't know.  What I do know is that Heather began having unusual seizures about 6 months afterwards.  A friend read about the NPA in a magazine and I contacted you.  Before I contacted you, I had taken Heather to a variety of neurologists who assured me that her seizures were entirely psychological and that no one had laughing (gelastic) seizures.  When no neurologist could explain Heather's seizures which were increasing from a couple of weird giggles to drop and full blown grand mal (clonic-tonic) seizures, I began to research her condition.  That's when the medical professionals began to indicate that I had issues with Munchausen's by Proxy.  You were one of the few people who took the time to explain about head lice, lindane, and a variety of related subjects.  I have always appreciated the time you took to make me aware of alternative ways to treat head lice, and I especially appreciate that you treated me as a colleague.
 
To make a long story short, after nine years of watching my once bright and active daughter go downhill, we found out that she had a rare condition that affected her hypothalamus.  We even traveled to NIH at their expense to be part of a study group and had her condition confirmed--neurological, not psychological.  We had both been stigmatized over something that was completely physical and through no fault of our own. We were vindicated, but nine years after the fact.  You can imagine how this constant finger pointing affected both Heather and me. I joined an e-group about hypothalamic hamartomas, which was the closest explanation to what Heather had. 
 
Despite declining cognitive abilities, Heather went to college and tried to live a "normal" life.  It was impossible, what with her seizures not completely under control plus all the related medical issues she had to endure.  In April 2001, Heather suffered a clonic tonic seizure alone in her dorm room, rolled over and suffocated in her post ictal state.  She was 2 months shy of her 21st birthday.
 
I now live in Oregon and we had some concerns about head lice here, and of course that got me thinking about my conversations with you.  I very much appreciated all you did for me and want you to know how comforting you were to me during a difficult time.  I still have a distaste for most--but not all--of people involved in the medical field.  I continue to be involved in the Hypothalamic Hamartoma (HH) group, and I have spoken with the group on the dangers of lindane.  We have several students who have chronic problems with head lice.  I told the local health department that I would contact you to get literature on head lice, scabies and lindane.  Thank you for all the help and support you've provided me over the years.

 

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2017 marks 34 years of Service.

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