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, June 4, 2011
Is it all about the gut flora?
Is it really all about the gut flora? Is that really at the root of all this? Isn't it amazing that "bugs" in our gut can control and influence so much of our body's functions?
As I've mentioned, we have seen some positive changes in many area's with consistent probiotics for Little Man. What I have also noticed is that missing a dose of probiotic, or going too long between bottles (and his dose), he starts to slide backwards again and what we see are symptoms we would be watchful for in a build to reaction. This leads me to conclude that reactions in atypical FPIES really are about the gut flora environment....is it the leaky gut, what about 'die off'? Either or both.
In short, leaky gut comes from having dysbiosis, having too many "bad" gut microbes and too much yeast/fungals that take up more space and push through the intestinal wall- making spaces between the tight junctions. These "holes" is then where whole proteins pass through and thus become allergenic as the body perceives them as toxin (being they are not fully broken down); but this would also be where toxins pass through- toxins from the release of bad gut bacteria "dying off". This release of toxins into the bloodstream has a whole range of adverse effects on you. It is thought to be at the root of many gut-brain disorders as well as auto-immune disorders of inflammation. It sure makes a lot more sense as I see it play out, piece by piece, with Little man!
We had a beautiful "baseline"- with his hemp milk formula, occasional millet and peaches, combined with consistent probiotics. Little man is missing nutrients in his formula- mainly Vit.C and B vitamins- these missing nutrients will be critical to moving to the next steps....but can we move forward without them? We wanted to try, to help him with his anemia. Trying Elk does not bring on any FPIES looking symptoms and he enjoys eating it for 3 days. By the 4th day, he is becoming a Dr.Jekyll/Mr.Hyde kind of boy and he of course refuses the Elk meat. He also eats much less of his formula. What is this about?
Is the addition of elk changing his gut flora just enough? Probably? His body needs to process through the changes stemming from his gut flora. And now we question how to push through- with a off and on cranky little boy who doesn't want to continue eating the food we are trialing; or his formula!
Coconut is supposed to be an natural anti-fungal. If these symptoms are from the fungals taking the opportunity to feed off this new food by products and multiply to unhealthy levels again, we need to control that. We have been working through small amounts of coconut for the past month or so. I make some 'crumbles' with coconut manna- and they are yummy. He loves them. Then I try to put some coconut oil (manna) in his formula- to begin to replace the not-so-healthy safflower oil. He refuses to drink it and then we play bottle battle for half the day. Finally he starts drinking his formula (without coconut) again and begins to feel better and we see less of Dr.Jekyll/Mr.Hyde and more of the calm little man we know is under all these symptoms.
This is where my thoughts were months ago, that once we began food trials strong again, that it would need to be carefully chosen foods, and likely rotated through- so no symptoms get overwhelming (for him or us), so his body has the time in between to re coop and win these battles. It will be a long process, but I know it will be worth it to get him a better menu.