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 24, 2010
Threshold of tolerance...
Little man does not tolerate trace proteins of dairy (without any doubts). He has also reacted to soy and rice. But the threshold appears to be higher for these as it was a month of supplemental soy bottles before we decided he had a soy intolerance. We still aren't sure about FPIES to soy but clearly was intolerant to it and at this point is too sick to trial it. Corn looks to be very similiar to dairy- reacting to trace proteins. Neocate has trace corn proteins, however it does appear to be the most broken down of the elementals(best strained if you will) corn proteins from the corn syrup solids.
We trialed corn. After corn fail, we saw less tolerance of his formula...and it was as if he can tell his body can't tolerate it because he started to self limit his intakes to less than 20oz.day. We moved to Hemp milk- doing a 50/50 mix and as we gradually moved further away from Neocate and more hemp- we saw these symptoms decline (only to come back full force if we move back up).
We asked our allergist at CHOP what he thought and he agrees it makes perfect sense. Finding that threshold can be tricky. We are going to attempt to find it. We have added back in 20oz of Neocate to his hemp milk. Upon adding it back in, he has had mouth itching, mottling of the skin, abd.;pain, reflux and pain from that, fussiness, burpy, and much disturbed sleep, and also mucous in his almost-too- formed-for-liquid-diet-diaper These have all been signs in the past of intolerance and all signs that decreased or went away competly as we lessened the Neocate. The doctors here at the hospital (who most are not currently recognizing his FPIES) want us to go to 100% Neocate and then see if he has intolerances. We are not here to make him sick and will not be doing this.
We had a long care conference yesterday to try and get our outpatient "team" and the inpatient team on the same page. It was intense and I really don't know if it made any difference. Our allergist at CHOP has been calling Sam's doctors and us daily to check in (despite being on vacation last week)-he has been a GREAT help and advocate for Sam. We will just have to see what the next days bring here, and then continue on with our regular "team" with finding Sam's baseline.