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, December 24, 2011
Trying a new plan?
For awhile now, I've had theory's as to what little man needs for HIS plan, An Individualized treatment plan. Taking him down to elemental nutrition enabled us to see what he was still reacting to, corn fail and removing him from the corn syrup in the elemental formula helped to confirm that corn was a chronic FPIES trigger for our little man. Removing that from his diet enabled us to add hemp, safflower, arrowroot and shortly after peaches and millet. That is where we have been stuck. Following his patterns, we learned that our little man has chronic FPIES- that his body doesn't react severely on the first exposure although it does act as a toxin in the body, removing the trigger food, removes the symptoms; but his body struggles to get back to a "baseline" (depending on how far we pushed what was toxin in his body). Why would so many foods be toxic to his body? Food that is meant to nourish not only doesn't nourish him but is toxic to him.
Much of my research, and following little man's symptoms, reactions, baseline, his involvement in Dr.J's research, response to probiotics, anti-fungals, and antibiotics keeps steering me that his gut flora guides his reactions or tolerance. Gut flora is involved in immune mechanisms in the body, I think this is where little man's FPIES is tied. Influence and guide his gut flora, influence his tolerances? When I was building his formula, I didn't trial each ingredient for days on end, we didn't have time to- I added them every few days. He never had any issues with any of these ingredients. Peaches were also an easy pass. Millet puffs were easy, the millet flour was up and down and it did take awhile to settle that it was not going to FPIES but just finding a tolerance level for him. Removing the millet and reintroducing it helped clear that.
Little man is a "build reactor", but his safe foods have been safe from day one. But we've also had foods that look like they could be safe and then they gradually get worse- each dose becomes less and each day symptoms build. So, what if we shorten the the trial? Moving forward before his body builds the reaction, before his gut flora changes enough to induce that response?
The new plan includes just that, trial a new food for 3 days, but not pushing through any building symptoms. If Little man begins to show his body is struggling, we will shelve the food and move ahead; if he is not showing any signs- we move forward introducing new foods. What if he builds a reaction to a food? Well, we don't know that yet. It's been over a year since we have successfully introduced a new food so we need to try this plan....an individualized to Little Man plan.