Hematology

We were up early for the hematology appointment, which was scheduled at 8:30am, we checked in at 8am and were not seen until close to 10am- so another day of waiting around but we were squeezed into these appointment's so all things considered, we are very grateful for the consults.

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.....