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, December 29, 2010
Inflammation healed, villous atrophy gone. Christmas wish (and many months of prayers), answered.
We now have a head start, a real chance at passing foods, at expanding his tiny menu -- or just staying still with the formula that has sustained him since stopping the Neocate. The only catch is, he needs some vitamins to fill in what his hemp milk formula is missing. He needs a multivitamin/mineral supplement. Having this will complete his daily needs -- to assure us his nutrition during breaks, during trials, during reactions, for proper growth and development. Taking away the Neocate and starting him on hemp milk formula stopped the daily assault on his gut, and his daily pain and random vomiting but the damage of corn had been done, other food trials did and left their "damage" and then there is the villous atrophy (from soy?, we still are not sure). But, taking away the Neocate also took away our complete vitamins/minerals. This was supposed to be filled in my a tiny menu- but we couldn't get to a tiny menu. So, next steps....to trial a vitamin. My searching has continued and thanks to some great dietitians- we have found one that is the "lesser of all evils"...apparently a 100% corn and corn derivative free vitamin does not exist. We found one that is worth trialing....to give him that complete component he needs in his diet.
But, trialing a vitamin with corn derivatives does not come without it's concerns. We are reminded of how quickly, and how severely he reacted to a Vit.C derived from tapioca (a previous fail from bloody dumping diarrhea resulting in acidosis), such a minute amount hit his system so hard and we landed in the hospital being evaluated for a blood transfusion. Not a lesson easily forgotten.....
But he needs the vitamin....
Our GI has assured us that we will do a 2 week trial of the vitamin (as we know trace amounts will potentially bring on a myriad of symptoms and not a full "reaction" of violent vomiting and diarrhea, lethargy. The plan is to push through the symptoms, noting them as we go and if they do not subside, build or continue to be worrisome- she will re scope him to be sure we haven't lost his baseline of NO inflammation and NO villous atrophy before we continue on the vitamin or onto food trials. The vitamin was ordered yesterday, will arrive at the end of the week, we will start it Monday.
But in the meantime.....we are weaning off TPN and we plan to go home from the hospital (after 25days) tomorrow!! We are SO ready to have him home again, to enjoy his baseline, to re-establish a "home" routine.
Little Man has been weaning off his TPN while reintroducing his hemp milk formula - which he has been taking really well. In fact, he has started to ask for his "bat-ba", he also asks for his "night" (translation blanket) when he wants his bottle, or a nap. He has learned other words such as chair, door, car, bye, thank you. He has added knowing where his eyes, ears, mouth, tougne, nose, feet, and belly are. He adapted to hospital life and we made the best of it, taking any moments as teaching moments and play time. His brothers visited when possible. We will all be very glad to have him home....we were able to take him home for 4hrs on Christmas Eve and on Saturday and Sunday evening as well - he LOVED every second of it!
We are ready to close the door on 2010, and greet 2011 with optimism and health. May the New Year bring us (all FPIES families) a renewed FPIES path!