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, May 4, 2011
I have learned that IFN-g and TNF-a are specific Th1 responses, which are the bodies response to invaders, bacteria that protect our bodies with immune responses. In a fine-tuned body, these responses go primarily un-noticed. But, in FPIES, these responses are uncontrolled as the body launched these against food. Seeing that Little Man has little response at this level but does produce counter-regulatory mechanism (high) tells us that his FPIES is atypical. But we already knew that....now we have a glimpse to why...
Th17 is a newly discovered Thelper cell. It is part of the GALT (gut associated lymphoid tissue). It is an alternative back-door to the Th1 response, through the gut. It can be controlled, or further exacerbated by the gut environment. One of Little mans worst reactions is to his own gut flora, Candida. He has severe dysbiosis and it is causing "leaky gut" which is causing him to build Th17 responses to every protein as the body is presenting these antigens in a dysregulated mechanism...likely due to his gut dysbioisis. If we can correct his dysbiosis, heal his "leaky gut", we increase his body's ability to regulate itself in respect to foods and the immune responses. Refer to my FPIES File Cabinet for a post on Leaky Gut.
Where do we start? We begin by removing all his allergens. Moving from formula to hemp milk many months ago accomplished this; but this move hasn't been without it's side effects. While this diet provided him with a safe nourishment of calories/protein/fats, it has not helped correct his dysbiosis. The missing micronutrients and diverse source of nutrients likely have made it more difficult for his body to maintain any homeostasis achieved, even with daily probiotics.
1. Remove allergens.
2. Provide nutrition.
3. Promote healing.
4. Correct dysbiosis and achieve gut homeostasis.
We are stuck in the dysbiosis and healing stages. We have healed his intestinal tract but there is more to healing the intestinal health than healing inflammation. We have clearly not healed his leaky gut or achieved gut homeostasis.
Going to the PCRCD gave us the confirmations of his severe dysbiosis, and his atypical FPIES. But now what? We are working our way through probiotics, we are getting stool studies done, and then we hit bumps in the road and everything comes to a halt, and even go backwards. The Vicious cycle continues...