Friday, May 17, 2013

Home from the Hospital (again)

Friday, January 2, 2009

We are home!  And we have the doctors stumped. 

I wish we could just figure out what is going on with Eliah.  While in the hospital, we received some abnormal blood test results....which indicate there is a problem.  But the test results are so randomly off, they do not point to any particular disease/syndrome/disorder. 

For example, Eliah's Folate (Folic Acid) level came back very elevated, which could indicate that he has a B-12 deficiency, but B-12 levels were PERFECTLY normal.  His Alkaline Phosphatase level (related to the production of bone) came back very elevated.  Normal range is 74-382, Eliah's was 1267.  Which could mean that Eliah is not producing bone the way he should (like a Vitamin D deficiency).  But his blood Calcium was normal, which indicates he has plenty of Vitamin D.  He also had low Hemoglobin and Red Blood Cell count and Iron levels, indicating that he has anemia.

The doctor wants to look at Eliah's kidney function in the next couple weeks, to make sure they are working properly.  But, in doing my own research (ain't Google great?), I have found a couple of things that seem to connect the abnormalities in his tests.  The doctor mentioned this, and I think, we may be dealing with a Bone Marrow issue.  Something to the effect that Eliah's body is not producing Bone properly, and in the loss of bone mass, may be having trouble with his bone marrow producing enough red blood cells.  I don't know if that makes sense, but some of the cause of this particular disorder may be due to radiation.  Eliah has had a TON of radiation from the numerous CT scans.

Basically, I think Eliah is having trouble absorbing the fat that he eats, and having trouble metabolizing his food to create bone.  That, in the chain reaction of events, could cause less production of red blood cells, and cause anemia (which we know he has).  With anemia, he gets lethargy, loss of appetite, increased developmental delay and behavioral problems. 

I called the Geneticist today in the hopes that we can possibly do further testing in the metabolic/auto-immune category of disorders.  And we are to go back to the Hematologist in about two weeks.  Ultimately, the range of possibilities with Eliah range from catastrophic to minimal.  We just don't know, and time will hopefully tell.

Thanks to everyone that thinks of us, and shares their thoughts and prayers.  

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