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Shannon's Take - Follow Your Intuition
Note:
The views expressed below are solely those of the author. They do
not represent the They do not represent the opinions of Conquer Pediatric
Chiari (C&S Patient Education Foundation) or its employees. Ms.
Schroeder is not a medical doctor and does not give medical advice. Anyone
with a medical problem is strongly encouraged to seek professional medical
care.
“Never ignore a gut feeling but never believe it is enough” – Robert Heller
“Listen to your intuition, It will tell you everything you need to know”
– Anthony D’ Angelo
Often when it is our children who have been
diagnosed with Chiari we take for granted that it is the neurologists and
neurosurgeons who have all the answers. We know that they have gone to
school for many years to be able to do what they do now and we tend to
place them on a pedestal. And often for many good reasons, they have
reputations for being fine doctors. We have talked to others, who have had
good luck with these doctors and they have only said good things about
them. Or perhaps they are on the cutting edge of the latest research in
the world of Chiari. Whatever the case we instinctively believe that
because they are the one’s with the white jackets that they always know
best.
I know as a mother this is what I thought when I
took my daughter to the first neurosurgeon appointment after being
diagnosed with Chiari. However, as I sat there and was told that my 2 ½
year old speech and language impaired daughter may just be acting certain
ways to get attention I came to the quick realization that WAIT a minute,
these folks know medicine but they don’t know my daughter. After coming
home that evening and feeling really disgusted at our first visit, I began
reaching out to others in support groups and I found out that this is
quite a common occurrence when it comes to children. We as parents truly
need to be prepared to be our child’s best advocate. We are the only ones
who truly know our children and their potential. This was a difficult
thing for me as I am typically a very quiet and passive person. It’s
something that has taken me considerable amount of time to form. However I
truly believe it is absolutely essential that we walk into these doctor
appointments as a partner with the doctor in trying to find a solution for
our children. Instead of a customer for these doctors who they can sell
any theory too.
Let me make it very clear most neurosurgeons truly
have their patients’ best interests at heart. They know the most up to
date research and techniques to help our children. This article is in no
intended to talk down any doctors whatsoever. However this article is to
let you know that NO doctor will know YOUR child as well as you do. We
also have to realize that being their best advocate also means working as
a team with your child’s doctor. They may say something that we disagree
with however we have to be fair and take all of their suggestions and
opinions into full consideration.
Neurosurgeons today are extremely busy doctors.
They are in surgery most days for 12 hours a day. And their offices are
always packed with patients. Chiari is a difficult case for these doctors
because there is truly so little known about the disorder. As I have said
before I truly believe Knowledge is Power. Nobody wants a better outcome
for your child then you do. Follow your instincts and demand answers. It’s
absolutely normal that we are nervous seeing these doctors during our
child’s appointments. That’s why preparation is Key!
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Have questions written out before you
go into to see the doctor. These doctors are busy and will more than
likely talk fast. Be prepared and make sure to get your questions answered
while you are there.
·
Ask if they have an email address that
you can send them any more questions at if you think of them when you get
home. (Trust me many will come to mind on your drive home.) Or see if they
have a nurse available to answer your questions if they are not in the
office.
·
Speak up for your child. Only you know
what they struggle through on a daily basis.
·
If you don’t understand a test result,
ask for an explanation.
·
Don’t be afraid to get another opinion.
You would most likely visit more than one dealership when buying a car so
don’t feel bad about asking for more than one opinion. Your child is worth
it!
Knowledge is Power. Empower yourself and believe in
yourself. You will be a key part of your child’s healthcare.
Best of luck to you.
Shannon
Shannon Schroeder is a mother of two special needs children. Her
youngest child was diagnosed with a Chiari Malformation in May of 2008.
As such, she has experienced first hand the effects that Chiari can have
not only a child, but the entire family. Shannon hopes to work with
parents and children to help make this diagnosis a bit easier to
understand, and to aid them in finding the help and support that they
need. Shannon can be reached at:
chiarichildren@yahoo.com
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