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, March 12, 2011
What will the blood tests show?
What? What did she just say? Cytokine, agonist, dectin 1?? Yes, it all makes sense and yes it is all complex. Immunology is complex, research is even more complex. I've been breaking it down, piece by piece-her research that all leads to this. There is hope for puzzle pieces, some that she has already theorized on.
We received some initial pieces from PCRCD yesterday, the documentation of the consult. Her impression:
#1. FPIES - a severe condition, not tolerating elemental formula (tried Nutramagin AA, Elecare, and Neocate) which may be partly attributed to his reactivity to corn derived products. Appears to be reacting to carbohydrate components as well but reaction is non IgE mediated. Multiple endoscopic examinations ruled out Celiac Disease, EoE, or IBD. It appears that he has impaired oral tolerance induced which may be partly associated with genetic components as well as intramuscular injection antibiotics during his newborn period.
#2. FTT- poor weight gain. He may require NG or G tube feedings but given his past medical history, a concern is his potential reactivity to tubings used for feedings.
#3. Anaphylaxis like reactions- documented with foods such as soy. However, this is non-IgE mediated, suspect cytokine storm.
#4. Adverse reactions to multiple medications.
For FPIES and Dysbiosis:
-Cytokine profiles in responses to food proteins and candida as well as checking his responses to a panel of TLR agonists and heat killed candida.
-Start probiotic, starting from very small dose....
For multiple severe adverse reactions:
-unlikely to be IgE mediated given time-course
-This may be more likely to be associated with rapid rise of inflammatory cytokines as reported in some patients. Given his time-course of reactivity to sugar molecules, a role of NKT cells may need to be considered.
Yes, a lot to digest but I've been studying for months- and preparing for weeks on Dr.J's specific research. The posts I began with FPIES terms is to help understand this (as I know some of you are also awaiting results from Dr.J, or awaiting appointments). I will continue with those posts tomorrow (having technical difficulties with my Word program I saved them in! AND we will be getting the lab results this week. So, stay tuned!!