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, May 7, 2011
So, being in the place of needing an antibiotic, is concerning. Antibiotics will still affect gut flora, regardless of if it is taken in through the gut or an intramuscular injection. But, as I mentioned in a previous post, this may be something that could help- if we can control this "reset" of gut flora and guide the "good" microflora into re-gaining their healthy control role.
Now, with stool studies in hand, I begin to see why he has had such good responses to the one probiotic we started with: CD Biotic which is: Lactobacillus rhamnosus, lactobacillus plantarum, and a saccharomyces boulardii. It is like it is made for him. He needs lactobacillus as he has no growth in that (on stool studies), so it would appear he has no/very little "resident" flora of lactobacillus. Without a pre-biotic to help the probiotic "feed off of"- explains why he seems to plateau on it.
The rochephin takes care of his ear infection almost immediately. We are relieved for that. His fever drops, he begins eating more again, and he sleeps (and doesn't need to be in our arms, upright, to do so). We restarted his "safe" probiotic by adding it to his formula (so that it is in each bottle). He appears to respond well to this throughout the day. I skip the next day of adding the probiotic to each bottle, to see the difference and he has disturbed sleep, very fussy/whiny/clingy and seems to be having tummy pain (kicking legs, gassy, wants to be held standing up only....). Add it back in the next day and much less fussiness, less stomach pains. He even tried a banana.....