Monday, July 30, 2012

Do We Want to Experiment.....

Babygirl has more than one nephrologist on board at CHOP.  We truly like them all, but have the most experience with Dr. A and Dr. B.  (Honest.  That's who they are LOL.)  Dr. B is the oldest of the team, and therefore most experienced.  But, speaking as an aging doc, experience sometimes overrides progress.  We get into an "If it ain't broke don't fix it" mentality.  Dr. A is the youngest (I think.  She looks incredibly young, but sometimes says things that make me guess she's about 10 years older than she looks).  With young comes progress, sometimes at the expense of experience. 

Each of us older docs have seen new meds work miracles.  We've also seen Vioxx cause heart attacks, and a dozen other meds pulled from the market when dire side effects are eventually detected when larger populations stay on those meds long-term. 

Babygirl's creatinine is 1.3 again.  The bounce is frightening in many ways, especially since it seems to be accompanied by a mild buildup of acid in her system, a subtle sign that Jorge's kidney may not be working as well as it should.  Her tacrolimus levels are bouncing as well.

There are a few choices.  There's another anti-rejection drug that has been used in kids.  It has some pros - less likely to damage a kidney long-term for example.  It has some cons - fewer skin cancers but maybe some risk of other rare cancers?  There is yet another that is untested in kids but very promising in adults.  Pediatric trials will likely start in November.  She qualifies for the study.

Obviously before we commit to either thing I need a lot of information.  Fortunately, all the nephrologists meet together to discuss each case.  Dr. A seems to be in favor of doing something.  Dr. B is more conservative.  And frankly, I have no way of telling which of them is right, and either of them would be more than willing to admit that the other one MIGHT be right. 

I agree in that we need to do SOMETHING.  I just have no idea what.



  1. It's choices like this that make parenting so hard. And it may be worse when one is as knowledgeable as you are--I so often just pick a doctor and go with whatever he/she says without the personal knowledge to even quibble. I am hoping that whatever you decide ultimately works to the benefit of your child.

    1. I think that's true for most run-of-the-mill medical care. But if you were ever in a position where you might be enrolled in something experimental, I'm guessing you'd educate yourself as best as possible to risks and alternatives.

      Sadly, I have to say that I have NO personal knowledge here, just better resources than average for finding stuff out.