January 24, 2013

Added another Dr

  Well today we added another Dr to Sadie's list of Dr's.  I know, a shocker, huh?  I knew there was a possibility of adding this specialty, just was not sure when we were going to.  Well the time was today.  We saw an endocrinologist (that makes Dr #15, but who's counting).  Why?  For a couple of different reasons.  1. Sadie has multiple midline brain malformations.  The pituitary gland is in that midline, and even though the MRI said the pituitary gland was intact and the proper size does not mean that it remained the proper size over or working correctly over the last 15 months  2.  Sadie is of short stature.  She is proportionate, but short.  She just started wearing 6-9 mo clothes.  3.  Over the last 6 mo or so it has become apparent that her right leg is becoming longer then her left.  So those are the main reasons that we thought it would be a good idea to chat with this Dr.
  I filled out all the paperwork ahead of time which took forever because of all of her issues and Dr's.  The Dr was very thankful for it because she said that she sat down last night to get prepped for today's visit and she started to get a little overwhelmed trying to figure out what was what, who was who, tests that had been down, and tests that she would like to have done.  After all the discussions, her assessment, going over her MRI she decided to run all the tests for her hormone levels.  She definitely believes that some of her issues could very well be connected to her hormone levels.
  What I found interesting though is that if these hormone levels are not correct her body would be reacting as if she had mitochondrial disease.  They have the same effect on the body.  After I realized how similar they sounded, I pointed this out to the Dr and she agreed that that is one of the reasons that it is so hard to diagnose mitochondrial disease because it can mask itself in many other diseases.
  Since this sparked my interest I immediately took Sadie over to the lab and had her blood drawn right after the appt (only took 2 pokes this time, unlike 20 pokes in the past).  Wouldn't that be something if this whole time we were blaming her mitochondria when in fact it was her pituitary gland?  We can actually do something about hormones.  I have so many thoughts going on in my head tonight.  I really wish tomorrow would hurry up and come.  I just want answers.  This could be one step closer to diagnosing her with something!

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