January 25, 2013

The results are in

  The Dr called me this morning to talk about Sadie's blood test results.  I'm not sure whether to be happy or sad.  I'll try to explain the best that I can.  All of the hormone test were normal.  No abnormalities.  Which means her pituitary gland is working perfectly normal.  Normal.  That's fantastic.  Not to many people use the word normal to describe anything that involves Sadie.  I was thrilled, until we started to discuss the one abnormal lab.
  Along with all the hormones she checked some basic labs too like her electrolytes, blood cell counts, etc...  and one was abnormal.  The prealbumin.  Prealbumin checks nutrition levels.  If the levels are low it means that the person is malnourished.  Sadie's is low, not extremely low, but low,  maybe of concern, maybe not.   There are a couple reasons it could be low.  1. Because of her recent hospital stay and not tolerating her food she was "malnourished" for a couple of days.  2. We may need to change her food regimen.  3. She may have an absorption issue in her intestines.
  Though I am hoping it is because of her recent illness, realistically I really don't think that that is what the issue is.  First of all it was 26 days ago.  Second it only lasted a couple of days.  It should not have effected her that much where we are still seeing the effects 3 weeks later.  So maybe it is her food.  We did change her food when she turned 1 yrs old.  We decreased her calories because she was now "obese" (according to their charts of weight vs height).  Maybe we decreased tooo much, she also has lost 1.5 lbs.  I will be talking to the nutritionist about this later.
  Although I REALLY am hoping that it is not reason number 3, it makes the most sense.  This is why.  That dang mitochondrial disease!!  Since the blood test showed that her hormones are not the reason for the poor weight gain, short stature, hemihypertrophy, low muscle tone, etc... it does give us one more reason to lean towards the fact that she does have mitochondrial disease.  Even though mitochondrial disease can effect all parts of your body it tends to attack certain organs more, the digestive system being one of them.  We already know that Sadie has poor suck/swallow (part of the digestive system).  We already know that some days she can't handle her food and she dry heaves/vomits and gets extremely fussy (part of the digestive system).  Now the blood test are showing malnourishment, that means that the intestines are not absorbing the nutrients that she needs to gain weight and grow (again part of the digestive system).  Do you see the pattern?
  What do we do now?  We will change her food regimen, see if that changes anything.  Then we continue to do what we do best, just wait and see! And of course love the snot out of her.  :)

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