Organic Acid…huh?!?

I am going to make this one short and sweet ‘cos I am teeter-tottering between some optimistic hope (is that redundant?) that the labs were in error and straight wiggin’….so because there is still a possibility that this is not it…I am not going to regurgitate what little I know about it…

But here is the jest…

I spent 3 hours with the docs at UNM Monday because unfortunately the old medical system took until Friday night to send over Caleb’s info. so they were unable to spend the time needed to look at it.  In the three hours I was there-they didn’t come up with anything….except, at the very end…some labs his previous GI had ordered came through and they were “jacked up”.  According to the  labs-he has an acid in his body that he shouldn’t and another acid that is produced to compensate for that other acid and his body is in a “mild catabolic state”.

According to everyone I have talked to so far…that can only mean 1 of 3 things

  1. A Vitamin B-12 deficiency
  2. A metabolic disease (organic acidemia/Methylmalonic Acidemia)
  3. Lab error and results weren’t really what they say they are.

Unfortunately, today we were able to rule out the Vitamin B-12 deficiency.  The doc called this evening and will be calling a metabolic specialist tomorrow to figure out how to proceed and get that ball rolling.  In the meantime he ordered the labs to be done again to rule out lab error.  Metabolic issues are very intricate and complex and his general pediatrician simply doesn’t know much about this.

I was able to speak to the Organic Acids Foundation today and leaned that this disease can vary in severity but can be deadly.  Most don’t survive their first attack.  If the episodes Caleb has been experiencing is, in fact from this…then I can’t help but be concerned. I am so very thankful that God’s got him in His hands. Either way-it is clear that Caleb is NOT on the “most severe” end of the spectrum. His only symptoms are the liver enzymes, neutropenia, enlarged red blood cells, the latest labs showing the acids and his catabolic state and a few “seizure-like episodes”.  I say that a little sarcastically because it is enough to have me on pins and needles with a heart that is ready to wig out 🙂 but realistically most babies with this have failure-to-thrive or die by now.  So-plllllllllllllease pray that there was lab error and/or if this is it…that God continues to cover him and protect him while we get the conclusive diagnosis and treatment.

I was about. to. wig. yesterday when I learned the severity of this…seriously about to wig….and then with a big ‘ol whack upside the head…I was stopped dead in my track of worry by remembering that God has Him. His will will be done…and I want God’s will…whatever that is because even though I think I am pretty smart 🙂 He is perfect and He loves me and He loves Caleb with a love that I could never wrap my little mind around-so I am not going to worry…I am going to trust.

I’ll share more when I know more.  I covet your prayer and thank you for it.

 

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3 Comments on “Organic Acid…huh?!?”

  1. Betty P says:

    Will keep Caleb and you and you whole family in our prayers.

  2. Niki Gerber says:

    Praying big prayers, my friend!

  3. the mrs. says:

    I am praying, and I don’t say that lightly.

    I wish I knew (again) the confidence of God’s love.


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