During one of Morgan's appointments with our pediatrician, our
doctor had a first year medical student shadowing her. She asked if I would be
okay with discussing Morgan's case with him. I said I would be alright with it.
Morgan was still receiving treatment for infantile spasms (a type of seizure)
and we had to go in twice a week to monitor her blood pressure. High blood
pressure is a side-effect of the Prednisolone that she was taking and her blood
pressure had been elevated for a few weeks. It was exhausting but necessary to
come in for a check twice a week. (The Prednisolone did not work and her
seizures have evolved to tonic seizures. We are now trying our third med).
I've read a lot of articles, blogs and comments from parents
about this very topic. Treating kids like Morgan as test subjects or a research
opportunity. I found the opinion on this to vary greatly. Some really took up
issue with doctor's fascinations with their kids' conditions. My take on it is
this: The more doctors and various people in the medical community show
interest, the more they learn. The more they learn, the more they may be able
to help Morgan or other kids like Morgan in the future. That is truly my
greatest hope.
I want to talk about her syndrome and her medical problems to
anyone who wants to learn. I want as many people in the medical community to
learn from her as possible. By going through her history with me, maybe they
will want to know more, do more.
It isn't always easy to talk about Morgan and Idic 15
Syndrome. Six months ago I couldn't talk about it without falling apart. It
isn't always easy to use the term "special needs." But it's very easy
to see how talking about it can help teach and raise understanding and
awareness.
I hope that talking about it makes me stronger and a better
voice for Morgan.
So I found myself spending quite a bit of time with the
first year med student, going over everything we've been through with Morgan
and answering his many questions. One question I liked hearing was "Is
there anything you wish a doctor had done differently to make her care
easier?" My answer to him was, "Don't assume anything until the whole
story has been covered, her chart fully reviewed and any necessary research done.
Then perhaps, you have a place to start, but never assume you know what's going
on with her or that a treatment will work. It's the doctors that view Morgan's
case as a puzzle with many pieces that seem to come up with the best plan." I wonder
if he took that answer to heart.
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