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."
Wednesday, March 16, 2011
Maybe it WAS just a cold....
Probiotics have been going SO well, he had the adjustment period where it took ~9days to weed out- some refer to it as the "die off" effect, Dr.J said it was from one of the strains activating the immune system; but however his symptoms were all over the place but never building or persisting and then finally evened out. We stayed in "evened out zone" for a few days before I started to notice there was a peak with their effectiveness. Is this because they are only able to reside for short periods of time before leaving his system. Probiotics help the resident gut flora, but do not become residents themselves; but they can "visit" longer to help out more if they are "fed" (bad flora, undigested fibers of fruits and vegetables, inulin= prebiotics). But Little man has little prebiotics in his diet (there is some fibers in his hemp protein powder) so the probiotics, after having their initial effects with the bad flora, now need more to feed off of?? More to help them??
Last Thursday, I worked a shift. I am officially on extended/extraordinary circumstances FMLA (have great support at my job through this chronic illness!!) but I am working intermittently through it and last Thursday was one of those days. That also coincided with the National ABC story being published about FPIES/Landon/Nevaya and me contacting ABC news here and unexpectedly getting an interview THAT day! So, needless to say it was a crazy, busy day. Little man never responds well to stress, or his routine being disrupted too much (is this the gut-brain connection?) so I attributed his "off" behavior that day to the crazy, busy day with a nap interrupted by the interview we quickly did that day. But Friday, he remained "off".
Our next step in the plan was to start a bifida strain, as soon as we got him to where we felt he was handling the lactobacillus strains well. So, my instincts were saying maybe that was what we needed to do next, either that or food! But we are awaiting the lab results from the PCRCD before deciding what food we will do next so Saturday morning I gave him a sprinkling of the bifida strain mixed with the lactobacillus strain I already give him. Five hours later, he woke up from his nap CRABBY and feverish. Now, my other boys have had bad chest colds last week and my 3yr.old is actively coughing still. So, it could be just his turn to get this cold? Or is he reacting to the bifida strains? This is just all too familiar to when we did foods last year- he would always get sick but on a safe diet, he never gets sick? Sunday he remained "off" (crabby, clingy, tired, pallor, not eating, bad breath, saying his throat had an "owie"); but by Monday he was looking and acting better (although still disturbed sleep- lots of crying in his sleep). I took him in to be evaluated for a viral illness with the pediatrician and he found nothing concerning for a virus so we decided that we should restart the bifida strain Tuesday and see how he responds to it. He got 2 doses yesterday, along with his regular lactobacillus dose; he had no symptoms....and he's starting to eat and sleep better!
This morning, I wake up with a cold....sore throat, upset stomach......maybe it was just a cold? Trial and error is the name of the game with this illness.
Next steps? We will continue with the bifida strains a few more days to see how his body responds, and then we need to get a prebiotic going. Maybe banana?