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."
Thursday, August 4, 2011
So much to blog, so little time!
We've gone from Catechism (church school) classes to a lake vacation, back home again for swimming lessons and then a surprise birthday weekend for "Papa", now back home and Nature Camp week. Next week starts summer vacation. What? Wait? Didn't it start 2 months ago? Doesn't school start in a few weeks? Yes, we did it to ourselves. We've kept our older boys busy and involved. And they are thoroughly enjoying it.
Little man, well- some things just never seem to change. We keep cycling through anemia, and the effects that come from that. He had the blood transfusion and really perked and pinked up at the Lake the following week (as I previously blogged about), and he really seemed to be doing well otherwise. A few symptoms here and there, and without the anemia- we would've just written them off to other things. But there is the anemia.
We just do not know where it comes from. The Hematologist we saw in consult last fall feels it is a combination of things: chronic inflammation, low iron in the diet (which isn't the case), and poor absorption/utilization of it. I dont' know how to describe it, except to say it is my instinct but she is wrong and there is more to it. I wrote to Dr.J (Immunologist at the PCRCD) and inquired if she saw any patterns with protein intolerant kids and anemia. She replied back that she does not necessarily note that; and then offers some speculation that, with Little Man, it could be something related to macrophage activation or something of this nature. Something to rule out. The hematologist is not interested in our outside opinions.
So, here we sit- monitoring iron and hemoglobin levels closely. The last time they fell, his hemoglobin went from being within normal limits to dangerously low, requiring blood transfusion- it fell 5 points in 6 week (from Mid march to beginning of June). In that time, he had reactions to probiotic strains, reaction to banana, a mystery reaction possibly related to cross contamination or banana, reaction to blueberry, and also to elk. With reaction, I refer to a variable spectrum of symptoms but each time he had colitis (blood in his stool) for 1-2days after. What is causing this? Are these losses enough to explain the sudden decline in hemoglobin and iron stores? Is there something connected to the immune/inflammatory response that affects the iron availability or absorption in the body?
Today, we had his CBC (complete blood count) checked. Hemoglobin June 4: 10.5g/dl, June 14: 10.6g/dl, today 10.7g/dl. He's maintaining, which of course I am grateful, but I don't understand it, more to research....