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."
Tuesday, August 3, 2010
Please,please,please dear Lord - I PRAY this is not one of those times. Little Man has been doing SO wonderfully the past few days....I lack the adquate words to describe the giddiness that I am having a more and more difficult time keeping a lid on! My little man is SO happy....could this be? Could we have finally found something to help him finally thrive? I can barely contain the anticipation of the next days- watching him be so happy, hoping for things to stay this way (and continue to get better so we can begin food trials).
Little man had a endoscopy in March, he just had the repeat one 2weeks ago. The first endoscopy, the inflammation wasn't quite visable but the biopsy's told the story...."non-specific inflammation", they kept saying. Now, on the re-scope- the inflammation was "patchy" and visable on scope (so yes, worse) and confirmed as worse on biopsy.
Corn fail has sensitized his system and it is almost so identical to when we started experimenting with supplemental formula bottles and I was still nursing- he was then reacting to trace proteins in my diet and we couldn't figure out why he wasn't gaining weight...and he just kept growing in his sensitivities....
Certainly makes a lot of sense to me, now to just move away from those trace proteins again.....they weren't ok in my breastmilk, why would they be ok in a formula? Clearly, it's not (for my guy who is sensitve to corn)....just have to clarify as kiddo's who are ok with corn thrive so well on the formula's and that is SO great but this just makes so much sense as to why our little man has been so super sensitive and so far away from a baseline for so many months. And why his scope had more inflammation after so many months on an exclusive elemental diet than before.
We re-initiated Neocate in his hemp milk formula, we began immediatly to see his inflammatory markers cascade of symptoms; we saw this plateau off - just right before we began to see blood in his stool. I keep logs of his caloric intakes (everyday since April), the past 10days since dismissal from the hospital, Little Man has been consuming an average of over 1000cal/day (he used to average around 600cal/day). He had a weight check today, he is down again. My theory of what is happening is that his system was assualted by the trace corn proteins in Neocate (once again, higher sensitivy after corn fail), it continued to assualt until it bled his intestines, now he is malabsorbing nutrients again. Time to make some changes....stay tuned....