I completely agree with you. As a parent you have to keep up with
the latest information and become as educated as possible in the
condition and medical implications and spects of the disease. I have
had to take a stand with issues as well. I got a second opinion from
his previous doctors at Vandy and they concurred with my preferred
approach so I made a choice to ignore the doctor here and go with the
information I have and the doctors I have more confdence in. Duke's
Clinic appears to have too many patients and they canot realy know a
paitient seeing them 4 times a year. I am sorry, but as a child
grows ALOT can change physiologically in a months time and if you
don't ever pick up the childs medical history and become familar with
it you canot make the best decisions. They ask me every time if he
has had a shunt replacement. If they look ed in his records they
would not have to ask me that or when or what kind. If anyone has
the name and number of the Greenville Clinic or any other clinic you
feel may do a beter job please send me the info to my email address.
counselorwillingham@...!! Best of luck to each of you and your
loved ones!!






--- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@...>
wrote:
>
>
>
> I also had a bad impression about some doctors in Duke. My child
also have a Spina Bifida, she will turn 4 this coming May 2007. When
she was 2 months old, her doctor in Carolinas Medical Center in
Charlotte, NC want to do a Cranial Decompression because he said that
she has a Chiari Malformation II, so, we asked for a second opinion
from Duke, sent my child's records and CT Scan and MRI's, to make the
story short, the neurosurgeon there said that we need to let our
doctor here in Charlotte do the surgery As soon as possible or else
it will damage my child's brain etc (he didn't even asked to see the
baby, he just decided to say do the procedure because he said that my
child's doctor is known for being a good doctor). Anyway, we did not
do what they want to do because we feel that the child doesn't need
it because she's not symtomatic, even if she has it. Until now, she's
ok. She's one of the smartest children in her school (She's in Pre-
K). They even want to put a shunt
> on her when she was 10 days old because she's a SB baby but we
didn't let them put one, until now she's still shunt free.
>
> Sometimes, as a parent, we also need to think slowly and won't
let what the doctors want to do to our children. Yes, they have a SB
it is possible they need the surgery right away but sometimes if we
know that the child is not symtomatic, we need to decide and tell the
doctor that we want to wait a little bit and see how the baby does,
this is what we do to our child.
>
> Just want to share my experience, just an information for new
parent that doesn't know a lot about SB.
>
>
> Thanks,
> Cynthia
> Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker
and without walker)
>
> Charlie Johnson <cmjcbt2@...> wrote:
> I just noticed your response about Duke's Clinic, we have
had an excellent relationship with Duke regarding our daughter's (6
years) issues with Spina Bifida and they have always been willing to
help make sure everything was going okay. I was just curious as to
the problems you were having, because that's odd.
>
> Stormie <counselorwillingham@...> wrote: Does anyone know if there
is a Spina Bifida Clinic in Greenville NC?
> I am presently being seen at Duke's Clinic but quite frankly I a
have
> been unimpressed with the care he has recieved in comparison to the
> care he had when we were in Tn at Vanderbilt's clinic. I have heard
> that there may be a clinic in Greenville and would like to get a
> contact number to see about having his care transferred there.
> >
> >
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> Charlie Johnson
> cmjcbt2@...
>
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