FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
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, July 16, 2010
If we have more pieces, will this puzzle finally come altogether?
Well, we put him to bed (happy baby all day) and he woke up SCREAMING mulitple times (too many too remember) last night!!! He was SOOOO agitated...well, now we have little doubts of how he does with cane sugar as well.
So, moving on- I went and got potato starch today and started that in his bottles, he drank them ok as long as I kept it low....well, it was a good thing I kept it low because the same thing that happened with tapioca starch and sugar was happening all afternoon with potato starch.
It would seem to me, at this point, we have enough signs to point us that this is a carbohydrate maldigestion/intolerance issue compounding his FPIES. Hopefully we'll know more soon as I hope we can utilize these carbohydrate trials to help further solve our Little Man puzzle and be one more step closer to finally getting him healthier and thriving, and getting real food trials going. Hopefully....
Sorry to hear the latest isn't working. I know it sucks, however it's one more thing you know about his body, so one step closer to figuring out a way to help him. I wish this process was easier for you guys and especially Sam...we will continue to pray for all of you and I added Sam to our prayer card at church as well.
ReplyDeleteLissa
Thanks, we appreciate the prayers....we know we couldn't go on without the strength we receive from all the prayers and support....
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