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."
Friday, November 5, 2010
The symptoms we were concerned with with the introduction of soy did not build or worsen. In fact, they seemed to even out a bit. We may be dealing with some refluxing as his agitated states are when he gets up in the morning and when he wakes up from his nap, so that could explain that. He doesn't reflux unless his body is not properly digesting a food. So, that is noted. His flat affect was very concerning, his "poker face" as his daddy calls it- an expression-less deameanor with no interactive play. But he didn't have that much today, and the refluxing pain was less as well. We felt everything looked stable enough to at least continue this at home- sleeping in his own bed and playing with his brothers, getting back into our routine may help filter out his fussy spells and disturbed sleep -- or it may make it more clear.
Whatever happens, we have a plan. If things stay the same- we continue soy and have our follow up with GI at the end of next week. If symptoms build, and are not vomiting/diarrhea/dehydration/lethargy- we call GI and go in for direct admission back to be monitored; if vomiting/diarrhea or concerns of dehydration and lethargy - we go right to the ER. We have a plan, a "safety net". We have a new level of stress relief, a heavy-heavy weight lifted off our shoulders.
Little man giggled when we walked out to the van after being dismissed - as soon as he saw the van, he giggled. He got excited to get into his carseat and sang on the way home, calling for "daddy" (his new favorite word). I've spent most of the time with him at the hospital, so he has missed his favorite playmate- daddy....and of course his brothers (we've been working on him learning how to say their names).
We continue with soy, mixed into his formula - increasing every day...unless we see new symptoms that deserve attention. I'm still nervous to call it a "pass". Soy is so closely related to dairy and his dairy intolerance is so sensitive, we've never even "trialed" a whole dairy protein because of his reactions to dairy in my breastmilk and from crumbs and from hydrolyzed formula's. What if he builds up an intolerance to soy? What if we're pushing his body? On the other hand, soy is a common FPIES trigger and if he could truly pass this, and thrive on it -- would really give us hope that we can do bigger food trials with more confidence.....although there is no rhyme or reason to FPIES triggers in kids but to have so many fails only under our belt- it will feel good to have a pass, especially such a big one.....