Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Monday, June 25, 2012

Labs follow up

When we saw our pediatrician a few weeks ago, we had decided that the Hemoglobin of 8 (normal is 12) was cause to watch things closely.   That is until 2 days later and the Ferritin (iron) levels came back at an all-time low for him, at 2 (normal is above 24, but he's rarely been that high ever). So, our GI changed the plan and we went ahead with the IV iron infusion as he was symptomatic and we really wanted him to feel better and stop that cycle (while praying the new ProViMin formula was doing it's job - not only restoring his levels but not reacting to it causing him to dump the proteins (and malabsorb vitamins/minerals).  The re-check was this Thursday- a week after getting the IV iron and 2 weeks after his last check.   

And it was GOOD news!!  His hemoglobin is now up to 11!! From 8 and within a week- this is a good sign that the IV iron helped and hopefully that his body isn't reacting to the ProViMin.   His Ferritin came up a whopping 17points and is now 19!!!  WOW!  Although this could be a "false" rise as it will appear higher right after IV iron therapy.  I am SO glad we got the IV iron for him, despite the week + symptoms he has been having from the corn in the dextran the iron is delivered with, his hemoglobin is up- he is feeling better, appetite is improved, and sleep is improved. Although he is still tiring easily and having mood swings (usually only when he is overtired and a lot more likely in the evening) that are not at his "baseline" I am still playing the guessing game to what is causing that.  I don't know that it is related to food; for one thing- we aren't doing any big trials....except the ProViMin.  

The other thing that I am worried about is another lab that we got checked, from an appointment we had a few weeks ago with the geneticist - a recheck of his carnitine.   He is low again but not low enough to trigger a clear deficiency so we haven't gotten a call back but I am wondering what his symptoms now correlate with this lab value....and what we should do about it.  The geneticist did say he wanted to supplement it (although admitted it may be difficult finding one that is corn free) because he fears he just isn't getting it in his diet.   I'm not sure why the formula wouldn't have it,but know his hemp milk doesn't (carnitine comes from meat and dairy sources).  We still haven't gotten to the bottom of this and it is either simple (not getting the source) or it is complex (a metabolic disruption disorder).  For now, we need to concentrate on finding a safe source of carnitine for supplementation as carnitine has a role in gut health.  

Something isn't quite right, just not sure what it is or if we are moving in the right direction with each day or getting further away....we need some follow up's with GI and the geneticist and he is (over) due for his 3yr.well child visit.  But, I just want to enjoy being at home and summer starting and spending time as a family, and celebrating his brothes 5th birthday, and going camping....and FOOD trials, and not dealing with medical issues and appointments and more lab draws and interfering food trials for supplemental trials.  So, I guess I've been playing Ostrich a bit.   Maybe tomorrow I'll start to make some calls....for now we're going with the flow- taking time to cuddle and lay low when he needs it and making the most of when he is feeling better. 

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