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.