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, October 9, 2011
Little Man had never had zucchini, he has had carrots here and there, and he's had potato- before we took away food at 7mo., and recently I let him have a few bites of a baked potato.
Little Man is a delayed reactor. He falls into a category of chronic FPIES, where he does not have an acute reaction with first exposures of the food. Why - we don't know. But we do know it takes multiple exposures to a food for us to see measurable symptoms; and with how badly we want a food to pass- we have even gone too far with symptoms- although the doctors would not always agree. But that is what this hospitalization is about- to match the lab and vitals to the other symptoms we see when his body is not accepting a food; and hopefully learn form the corresponding symptoms to better guide future trials, at home.
11days ago, I let him have a few bites of some fresh, organically grown, boiled skinned, seeded zucchini. They were boiling in the pot and he called them a cookie and asked very sweetly for them. We had zero symptoms of concern for the next 18hrs or so. And then he had a liquidy diaper- ones we see when we know he is reacting. That same day, I had also started a new hemp protein powder- since the one he has been on for a year has been delayed in production, we needed to find a replacement. This one has plant extracts of sage and oregano- something he could potentially react to as well.
The diapers continued for 8 more day. Then, they finally stopped. The weird thing was that they weren't frequent- only once a day and for a few days, he wasn't even having one a day. And he didn't have too many other symptoms that would be terribly concerning- nothing building. So, my worry of it being the protein powder that he was still getting lessened and my concern that it was in fact the zucchini is growing. There is ONE other potential cause and that is a board book he sucked on on Saturday morning (2days after the zucchini). He's had full vomit reactions to board books before- I remember specifically because there were pieces of a board book in his vomit one time. But he didn't vomit, he had diarrhea for 8days....
The food trial next Monday will fill in the rest of this story...I hate that we have to, likely, make him sick but I don't know what else we can do at this point. We've tried everything else over the past year; and he not only needs a more varied diet, we need to know why this is getting worse for him instead of outgrowing. As with everything else, time will tell. And our Faith will guide us