[tri-med] Re: Seeking Help

>Fear not, Dr. Hopkin isn't naive - just very skeptical.  
>We are well aware that there are plenty of long term survivors 
>(as I am sure he is, too)...My only reason for pointing out how 
>he has come around since working with Rachel is because I detected 
>much cynicism toward doctors from the group and my husband and I 
>don't necessarily share those feelings regarding our doctors.  

Aimee, 

I'm way behind here in my mail...and I'm not ever sure if I've
welcomed to the list yet or not...  

If not or again WELCOME!

If some of us seem a little jaded on doctors, it's because of
personal experiences...however there ARE some really good ones
out there too.  It's just a matter of shifting out the keepers
from all the rest.

We've had nothing but good pediatricians, total of 4.  Even the 
2 we got stuck with through HMO's were caring and wonderful.

But I've still gotten very good at firing doctors.... 

But took us 3 cardiologists to get one who would talk to and level 
with us about our child's heart condition.  1st one even "made 
up" a family history for her hospital chart....I don't know what 
else to call it.  "No relevant family history."  I read that when
I finally got my hands on her medical records.  Woman didn't even 
bother to ask me or my husband about family history.  My dad had 
a heart murmur and died in his 50's of a heart attack...my sister
had a murmur she out grew at puberty, and her youngest daughter
had the same murmur (aortic stenosis) and went on to have open
heart surgery at 12.  That was exactly the same dx our daughter
ended up with. Secondary dx of PDA that didn't close on it's own.  
My husband has a niece with that one.  Trisomy or just family? 
Who knows.  2nd doctor I swear was just going do let her die 
without even telling us what our options were.  3rd one wasn't 
allowed to work in the hospital anymore due to too much radiation 
exposure, but he was a real gem.  Told us exactly what we were 
dealing with, all of our options, and let us decide what we wanted 
to do about it.  Dr #2 got stuck doing the PDA surgery....he was a 
excellent surgeon, just a crummy human being.  We've gone through
numerous cardiologist since due to their moving, and all have been
wonderful.  Once she made it past her death sentence of 3 and was
walking, communicating, etc, they didn't even question she was worth
the effort....

Took 2 eye doctors...1st one we'd ask a question and he'd give us
a 10 minute response that always ended with, "But that's not what
she's got."  It was like pulling teeth to get his written records,
and then they turned out to be hand written and totally illegible.
2nd and all subsequent doctors have been good (except for one short
stint with an HMO who's doctor had no idea how to examine her, and
just declared she didn't need glasses - she'd been wearing them
for years, and did again just as soon as we changed insurance again.)

2 ENT's  1st one could never remember who we were, where we lived,
what she was allergic to, and that we had private insurance, not
MediCal (Medicaid equivalent).  He only wanted to treat the symptoms
not figure out why she'd had one continuous ear infection since birth.
He also made her ears bleed every time he examined her.  Last time he
did, I let go of her feet and let her kick him in the crotch before 
finding a new doctor at age 4.  Old doctor had told me removing her
adenoids wouldn't help, when I'd asked him about it.  First words out
of replacement's mouth, "Has she ever had an x-ray taken of her 
adenoids?"  He sent us down stairs to x-ray immediately, and started
the paperwork for the surgery before we left that day.  They were
the biggest adenoids he'd ever removed at that time, and were totally
wrapped around and cutting off her eustachian tubes.  He had her ears
stable with diligent prophylaxis treatments.  Had another bad experience 
with the HMO's ENT who only wanted to treat the symptoms again.  Went 
back to the good one just as soon as we could.  And we're still with him
at age 21, and adore the man....

Neurologist, actually have the worst one of those to date currently.  
Only person I've ever met who can yawn in your face without opening
her mouth, but she's the only choice in the best office in the area,
due to my child's "advanced" age.  Still annoying though that I knew
less when I left the initial consultation with her then I thought I 
did when I walked in the door.  Over the years she's seen by 6 doctors 
in that office, and two others during HMO times.  Of the whole lot, 
I'd only give 3 of them high marks...and at least one of those thinks 
I'm totally whacked.  Just between you and me, he's probably right.... ;)

Oh by the way, by education I'm a medication/treatment nurse, but these
days I'm my kid's "In Home Support Service's Worker" & private duty 
nurse....

Fawna, mom to Thom & Rhonda, Lara and
Philina 21 (PT6p & Moya Moya Syndrome)
wife of Douglas, 10 >^..^<, 3 llamas, 
2 tortoises, & 1 musk turtle, 
Philina's Pharm Bengal Cattery
Escondido, CA., USA
http://home.mindspring.com/~fawna33/index.html
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~~*~ 
There is a theory which states that if ever 
anybody discovers exactly what the Universe 
is for & why it is here, it will instantly 
disappear and be replaced by something even 
more bizarre and inexplicable. There is yet 
another theory which states that this has 
already happened. 
~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~ ~*~

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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