Wednesday, January 5, 2011

Fe, TIBC, GI, G, J (this is not an eye exam)!

For about 8 weeks now Tomas has shown a steady decline in energy and stamina and has been sleeping even more miserable than before. I have brought it up here and there to doctors who take one look at his smiling face and say everything is fine. That smile is the reason no one in the medical community takes me seriously! He can't possible be sick - look at that smile! (I love that smile!) I just want it to be as frequent as it used to be. It is hard to confince a doctor that he used to smile ALL the time, and now he only smiles HALF the time.
Turns out he has SEVERE iron deficiency anemia, he has depleted almost all the iron stores in his body. His iron levels are less than half what they are supposed to be and his ferritin (iron stores) is neglible. His TIBC (total iron binding capacity - a protein the body makes to bind iron) is really high; meaning his body is making all these extra proteins to try and find some iron, any iron. How sad is that?
We found this only after I sent a spreadsheet to the pedi last week showing him the steady decline in Tomas' Hgb. He agreed to check his iron and iron stores since we were going to check his neutrophil count again anyway. Low and behold, we now know why he is so miserable and his breathing is more labored than normal - no iron. Ya think?
The pedi thinks it is because Tomas is J fed and he is not absorbing the iron in his diet since iron is best absorbed in the duodenum (right as the stomach empties). Fine, I'll give him that. However, Tomas has been on J feeds for 19 out of his 24 months and not had any iron issues or Hgb issues either. Why show up now? Nothing in his diet is different, and he gets 130% of the RDA for iron. So why now is he having trouble absorbing it? I don't buy it.
Pedi called GI and he wants to start on iron supplements (fine) 3 times a day into his G (not fine). First I don't think adding more iron is going to help since he already has enough in his diet - but ok - we'll give it a shot. Second, we all know Tomas has a GI bleed, not major, a little blood here and there in his g tube when I vent and a small amount of bloody discharge around the stoma. But I am very hesitant to put IRON into his G and send his stomach realing. Pedi wants me to mix it with vitamin c and some pedialyte (low sugar - Tomas has hyperinsulin dumping when we feed into the G - so I can't put any significant amount of sugar into his G) and if he is having difficulty with it then to just run it through the J. Ok wait, the J? The J that you say is causing the non-absorbtion of the iron in his diet in the first place - how does that even make sense?
Ugh and double ugh - can anything ever just be straightforward? I am really hesitant to put absorbic acid and iron into an empty belly that we know has an open wound, call me crazy, but the pedi wants to give it a day (3 doses) and see what happens. I am going in an hour to pick it up from the pharmacy. A very large part of me wants to wait until we see hem/onc on the 13th, but if the problem is as significant as pedi made it out to be then I know I shouldn't wait that long. Wish me (and him) luck!

1 comment:

  1. Lots of luck and lots of prayers.Gotta get that smile back on that beautiful face of Tomas'.just got to.

    Does seem like an awful lot on an empty tummy,with two things that are notoriously hard on bellies.But I get that he needs it,hoping he surprises your mommy instincts and does just fine.

    *Thanks for the site help and the links.hoping to jump on and get some support for a few issues,like not eating one single,solitary thing orally and pooping oh say once every 7-12 days ... just little things like that!