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, March 8, 2011
FPIES and IBD
Once he started reacting, and he would go from constipation to diarrhea and back again, and he had so-so much trapped gas....my instincts told me he needed a probiotic. I began taking larger doses for myself, so it would be passed through my milk to him; I also took enzymes. I felt like these helped, we noticed differences, they bought us time anyway. Until we trialed the formula, and started to introduce foods....
Once we found out he had "non specific" intestinal inflammation on his first scope at 8mo.old, my instinct was to get him on a probiotic and a good source of Omega 3 fatty acids. He failed both, even though I thought I was getting "clean" and "hypoallergenic" sources. Looking back with FPIES eyes, I now know better (added ingredients and cultured on dairy, etc). But then, I have been too nervous for setbacks to trial any again. I didn't want to set him back trialing a probiotic when what he needed was food.
Dr.J has helped us see that we did in fact need to take that step back....correcting the gut flora first- the body will continue to attack itself basically if we don't first re-align it's inhabitants (gut flora). Dr.J has studied the effects of probiotics on kids with non-IgE food allergies and studied probiotics in general. She was excited to tell me that just in recent years has there been more information about the specific effects of specific strains of probiotics- that each strain has their role. More research is needed to fully understand but having more to work gives her a base to go from. With Little Man reacting to so many things, she wanted us to start very slowly, low doses with low strains. We started with a double lactobacillus strain in a low "sprinkling" dose. And we got to see why starting low was essential as he showed signs of adjusting or die-off for the first week; but then it all just "evened-out" and he has been doing really well with them....he even likes the taste!!
Once he evened out with tolerating the dose, I started to notice he was maybe "peaking" on that morning dose- he was doing really, really well all day but was starting to melt down in the evenings and had disturbed sleep at night (but then was napping more during the day)....it seemed if he was within the "window" of the probiotic, his body was relaxed- he could sleep and eat, and play "normally", but that once that wore off- he reverted back to how he has been for months-- which isn't overtly off baseline but not as good as he is when "covered" by the probiotic. So, I began to wonder if I should start a 2x/day dose- a morning and an evening. I started this on Sunday and he did beautifully with it and continues to show signs of improvement (able to hold his baseline all day); but if we get behind or miss a dose- we start to see whiny behavior, pale look with bags, and more flat affect (nothing extreme but a noticeable difference). On the probiotic, he is running, playing, giggling, learning new words, eating full bottles, sleeping well (falling asleep on his own), pink cheeks and vibrant color eyes. There is a difference, and I am a little amazed at how much this small change can be making such a big impact on his demeanor. And it makes me curious as to how and why....
I sent Dr.J an e-mail to inquire her insights on it. She relays how much it is individualized and how we can learn a lot from the bodies response to a probiotic. She agrees to try twice daily doses, or try increasing his once daily dose- or both...experiment to see where he responds best (now that we know what his responses to the probiotic looks like). She also relayed that his body showing good response to the bigger strains could show that he has inflammation throughout- small and large intestines (from poor gut flora- an underlying inflammation from the poor numbers of good gut flora- essentially his gut is attacking itself, or not able to properly restore and rebuild itself. It makes a lot of sense and I can see what she means about being able to tell what is going on in the gut by the effects of a probiotic. She relates that it is similar to what happens with people with IBD (whose body can attack itself regardless of what foods are eaten).
Each day I learn more, we take a step, we watch symptoms and process through what is happening and move to the next step. Wait, don't look now but are we taking steps forward???
The next days will be spent working out his dosage and timing of dose with the current lactobaccillus strain. The next step is to add a bifidia strain, and watch and learn how his body responds to that. We also will be finding out his tests results within the next 2 weeks. I will be posting more about what those results will be showing in an upcoming post, as well as posting his results when we find them out! Stay tuned!