We had the recommendations from the GI that she wanted to try and push him, to push the food trials and stimulate his gut. Has his body just forgotten what to do? We took food away to go to elemental nutrition (and gut healing) at 7.5mo.old. We were able to introduce 5foods within a few months, and then everything stopped. Why? She wanted to get a better picture of how his gut handled food before we commit him to longer term TPN (IV nutrition). So little is known about FPIES mechanisms and what is known is more on the acute responses to 1-2 triggers. The chronic reactions to multiple foods is complex. Our GI hasn’t always known what to do to prevent his FPIES reactions while finding him a diet; but she has gotten him through some rough times, and she has advocated for what he needs. The TPN he is on has literally saved his life. Do I wish things were different? That someone knew how to help him more? Do I wish we knew what to do next to avoid having to make him sick first? YES! But little man's FPIES is complex, so even when we get one thing under control- something else sticks out of the box….and the harder we try to shove it all in a box- the more it sticks out! There aren't any protocols to follow, we must simply follow him.
In doing so, we have learned with the TPN, that his body knows how to utilize most of his calories- there are a few nutrients that remain an open ended mystery still but have become more clear with the TPN supplying them – knowing that he is not malabsorbing them (or being malnourished as some may suggest).