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."
Sunday, April 3, 2011
It first happened last fall when we saw a GI doctor on 2nd consult, he called Little Man "FPIES plus"...he has FPIES to some proteins but something more is going on....but what is that? My research led me to Non-IgE food allergy. It appears the foods he doesn't have FPIES to, he risks Non-IgE allergy to. Non-IgE allergy is a protein intolerance, of which FPIES is the severe end of the spectrum (in my opinion). But how do we avoid his Non-IgE protein intolerant responses from becoming FPIES trigger reactions?
A visit to the PCRCD with Dr.J and her advice is to correct the gut flora- re-establish his gut homeostasis with probiotics, and enzymes if needed (Little man has not been advised to start enzymes as his doctors fear he will react to them at this time- it is something we will re-explore in the future). Dr.J was even concerned he may react to a probiotic. She even gave him an oral steroid as her experience was telling her, he may need this to even tolerate the probiotic to re-establish his gut flora to achieve gut homeostasis, and not be so reactive to all foods. As my last post illustrates, he did not tolerate the probiotic. Now what? Oral steroids? I am not sure. Steroids can wreck havoc on gut flora too.
We go to see an Immunologist tomorrow, maybe we'll find a few more answers there.....but I have felt the need to bump up my research once again- to search for next steps to explore our little man's "FPIES plus".
In the midst of researching next steps, I am also helping with Little Man's Benefit/Fundraiser. I have already received so much help- from my sister, and a fellow FPIES mom who made the fliers you see/will see displayed. I am so very grateful for the community involvement for supporting our family through this difficult time. The goal of the benefit is to raise awareness, and share with our community the story of FPIES in meeting our son. The goal of the fundraiser to raise funds for CHOP research; so that moms like me do not have to research every step of the way, so that doctors are better educated and aware of the symptoms and complexity's of this allergy, so that research can begin to see what the parents see in the day to day of FPIES symptoms, reactions, intolerance's....our daily research. I have hopes that the CHOP research will pick up where other studies have left off. Past research has already brought us to FPIES being a T-cell response, a Non-IgE food allergy. Research has begun to define the Tcells and cytokines involved in these FPIES responses. More research is needed on the immunological responses, on genetics, on allergy, on the guts role in FPIES. Although there are little current FPIES specific study's being conducted, there are studies being done on oral food challenges (at Mt.Sinai), and on T-cell mediated responses (across the country) as well as the Non-IgE food allergy cytokine breakdown (at PCRCD). For more information on research being done on Non-IgE food allergy that applies to FPIES read here for information on the research currently being conducted at the PCRCD.
CHOP: "Hope Lives Here". Even if Little man will not benefit directly from the studies we are raising money for....FPIES will benefit from Little man. The research will be important to defining FPIES, to defining better treatment protocols, so that even if a child with Little man's "FPIES plus" presents in a specialist office, if FPIES is well-defined and treated....maybe, just maybe....the symptoms that arise from it can be well addressed before they become complex.