Monday, May 19, 2008

The best doctors on the east coast

The neurologists at Kennedy Krieger want us to go through another medical test with Robert.  They've directed us to another lab that is researching bilateral striatal necrosis, which is what the lead neurologist feels matches the pattern of brain break down Robert is exhibiting.  This lab is looking at a gene that is involved in a related illness and biotin processing that is different from the one at Mass General.  

The new researchers are at Case Western University in Cleveland OH.  Below is the basic description of the study.  As with all research, this is intellectually interesting, if not as far along as the Mass General study.


My initial reaction to this caught me by surprise--not so much to the study as to the idea of another diagnostic test.  In December, the idea that we might be able to find an answer was very compelling.  It seemed as though we were on the cusp of reshaping our lives--of being able to make plans to establish the contours of what a future might look like, as though there had not been one before.  We generally live within the confines of an ever-moving present moment--kind of like a freight car on a train.  We remember where we've been the same way tourists remember places they've visited.  But we don't know what the future will be or where we're going.

There's some comfort in that, given the severity of the situation.  Sometimes it's better not to know.

But my initial reaction was similar to Roger's: back to that perverse sense of feeling sorry for all of these doctors who become so convinced they know what this is.  Sure, we'll do the test--why not?  If it does give us some information, that would be fine.  But I had this distinct feeling that I did not want to get emotionally caught up again in this one.

Roger and I agreed: what our kid is really, really good at is confusing doctors, the best doctors on the east coast.  He gets an A in that.  There is no child who can do better at not being diagnosed than Robert.  We will find something to be proud of him about in this situation.



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