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."
Saturday, August 27, 2011
The hematologist had a few things that could be looked into/ruled out- although acknowledged they weren't likely and actually just in research stages there at CHOP for defining diagnosis of....we will look into them when we get back home. But, really she just acknowledged that his FPIES is just this way- that he is either losing blood (in stools), or malabsorbing it. Being that he has the tendency for the atrophy and blunting, she feels this is a primary reason for the chronic nature of his malabsorption of iron leading to iron deficiency. She fully acknowledged that Hemp milk is a great source of iron, although it is a non-heme (not animal) source so that could contribute a little but she also said that even if he was getting heme (meat) sources- he would still have the malabsorption issues- no matter what was going in. She recommends he stay on iron all the time- if he doesn't tolerate the oral, then to continue IV iron and that once he gets a better diet- he may be able to decrease his Iv iron treatments frequency but that he would still need it.
It was refreshing to have doctors here at CHOP familiar with FPIES- they are treating the disease within the child, and not the parents. Listening to little man, listening to what I have to say as his voice.....