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, July 30, 2011
Multi-layered treatment plan?
I feel like Little Man's treatment really needs to be layered right now:
1). Healing his villi/restoring his nutrition, his immune system will be out of whack just because of his lack of micronutrients alone. Although I am grateful Hemp is a very nutritious milk and that his body tolerates it well, I am constantly worried about his missing micronutrients. It is the sole reason why we keep pushing things with him- but also the reasons why we aren't getting anywhere...
2). Healing his gut -the Functional Medicine approach is something I can appreciate and really feel strongly that we need to incorporate it into Little Man's big picture and long-term healing. We will work through some new probiotic suggestions- more customized for little man. Realizing probiotics and restoring his intestinal flora will take a long time- but I need to do these steps to assure not only that we are doing everything we can do now to help him thrive through this illness but also to protect his gut from the things he is at risk for in the future. We've already seen that the addition of probiotics in March had been a major significance to his health when we added them, so I do feel this gut healing is essential for his course.
3). Allergy/Immunology consults- a return to CHOP?? Dr.J (research MD in NJ) mentioned the need for further research into FPIES kids who do not respond to the current treatment of elemental/elimination diet in healing them....that there is further immune system involvement with these kids.
It's time to make some big changes again, we are just too stuck with current plans and he is declining again.