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."
Sunday, February 12, 2012
Alimentum RTF Challenge, are we ready?
The decision is made to challenge Alimentum Ready To Feed (Ali RTF), it is a challenge because he has reacted to both casein (dairy) and tapioca before...although we've never been sure if his tapioca was FPIES or dissacharide deficiency related, we've simply avoided- it made him very, very sick and necessitated a hospital admission to recover. We plan for the hospital challenge, to observe for both acute or chronic reactions, since Little Man has more chronic reactions than acute and this isn't a food we can shelve for varied symptoms, we need to be sure we looked at everything and that his symptoms are logged carefully if needed to look at them retrospectively.
We prepare for the hospital stay, a planned 3 days to assess all symptoms and tolerance. We plan on 3 days but we prepare for more- knowing little man always seems to throw us some curve balls. The days before, we start to get nervous, nervous about making him sick, nervous about his failing PICC line and what we'll do if this doesn't work. The PICC that was scheduled to be converted to a port just a week prior, a decision based on his inability to tolerate the food trials we had done at home for the past 2months; but a line infection scare left us rethinking things at the last minute, deciding that the benefit of tolerating the Alimentum RTF is worth the risk of a reaction being that it has been 2yrs. since he has had a dairy derivative (in a similar formula).
Excited? Yes, that if he passes Ali RTF- we could have a supplement to his hemp milk formula and we could just BE- just take food trials longer and only when he's ready instead of pushing him. We could make plans easier, we could see little man at a baseline for more than a week before we move on to the next step. We can just breath.
Nervous? Yes! Little Man hasn't had a food pass since the summer of 2010! His body hasn't accepted a new food for 18mo.! (another post). Will it now? If he isn't ready for dairy or tapioca, do we risk re-sensitizing him and having to wait longer to trial it again? And of course, there is the fear of making him sick and having nothing to build a formula from. And....will he even drink it?