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EDITORIAL
I have been meaning to
write these comments for several issues now ~ but now after
yet another Family's tragic situation I am compelled to do it
now! In the field of Metabolic and Mitochondrial
Disorders, Families are not immune to having to withstand
FALSE ACCUSATIONS of hurting their own child (aka
Munchausen's Syndrome by Proxy) ~ especially when Drs
have not been able to determine a diagnosis ~ they sometimes give
the MOM the 'diagnosis' of child abuser due to an 'insatiable need
for attention from medical practitioners!'
It's quite ironic that
on one hand we have some professionals/states/companies trying to
DELAY the expanded nbs process (thus more
babies die and go undiagnosed and experience possible CHRONIC
medical complications AND Drs' visits ) and on another
hand we have some professionals BLAMING PARENTS for MAKING
THEIR OWN CHILDREN SICK and constantly taking them in
for medical care. Children that should have been DIAGNOSED
AT BIRTH instead of after YEARS of going from Dr to
Dr with MANY not knowing what these disorders are, let alone what
diagnostic tests to order (Refer to http://www.fodsupport.org/dx_fod.htm)!
These kids ARE SICK ~ because they AREN'T
DIAGNOSED EARLY BEFORE CRISES OCCUR
~ so why wouldn't the parents take them into the Drs? RESPONSIBLE
PARENTS DO!!
And THEN all because these Families
have a child's medical record 4+ inches thick with past Drs' visits
and lab tests etc, they are ACCUSED (many times by someone
that hasn't even SEEN the child clinically and based on some
ridiculous 'perpetrator profile' of perceived psychological and
behavioral characteristics!) of deliberately making them
sick to get the attention. Some professionals have made the jump
from so-called observations to psychiatric diagnosis without even
having a 'well-defined criteria for determining what IS and IS NOT
a case of MSBP' as well as that 'profile' not being 'subjected to
controlled empirical studies.'
There probably
ARE real cases of this 'syndrome' ~ and there ARE WAYS
to TRULY investigate the CRIMINAL ACTS (ie., cameras
in the hospital room, etc) if this is going on. Yet, ALL
of the Families I have spoken with are THRUST into the 'YOU ARE
GUILTY' realm before any TRUE investigation may occur!
And before you know it family services is in there threatening to
take the child ALL BASED on the constant Dr visits and the child
chronically being sick!
Metabolic and
mitochondrial disorders are relatively 'young' disorders
and they ARE COMPLICATED ~ not only in the diagnosis
but in some cases the treatment. It has taken some of
our Families YEARS to FINALLY get a correct diagnosis and I would
take a guess that many have medical professionals' 'suspicions'
written up in their child's medical files ~ some of our Families
have SEEN them! And fighting to clear those records is ANOTHER
NIGHTMARE for Families!
There was an August 9, 2004
EXCELLENT article in The New Yorker, by Margaret
Talbot, that addressed this very issue (the above quotes
are taken from that article) ~ how FALSE ALLEGATIONS can SHAMEFULLY
destroy a Family and also place the children in even more danger
by delaying what they REALLY NEED ~ a CORRECT DIAGNOSIS
and TREATMENT!
Without going into a lot
of detail, the article describes several Families that sought medical
care for their children yet some professionals felt they were seeking
TOO MUCH care, 'almost addictively' (despite some of the children's
Drs telling them to see these other Drs for tests etc!). It also
discusses results from recent systematic studies, that the
'profile' being used IS FLAWED yet still being used ~ and
SHAMEFULLY still carries weight in the judicial and more recently
in the educational system!
I strongly suggest you
read this article ~ I have it in a word document if anyone would
like to read it. It will make you BOIL as it did me!
Our Families have enough
to be concerned about ~ they don't need some person 'diagnosing'
how they are trying to help (although to them, it's HURT) their
child/children. What they need, as I stated
at the beginning of this piece, is a CORRECT DIAGNOSIS
and TREATMENT ~ not medical and legal authorities
and family services wrongfully breathing down their necks!!!
Deb Lee Gould, Director
deb@fodsupport.org
July 2005 issue
FOD Communication Network
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