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?

After stopping tapioca starch over the weekend and restarting it on Monday with a swooping repeat of last week (agitation, GI distress and blood in watery stools), we stopped the tapioca starch yesterday morning. Little man got plain Hemp milk all day yesterday. We tried to just put a little cane sugar in his hemp milk to see if that helps to keep his blood sugar stable enough so he isn't so ravanously hungry and over eating (like he did on Monday- ate 83oz of hemp milk that day!!). I have questioned his tolerance of the cane sugar, but it was something to try so Little Man's daddy wanted to give it a try. He gave him some sprinkled on the table for him to play with (large granules) and sprinkled it on the hemp popsicles we make for him- he licked it a little. We also tried to put it into 2 bottles last night- of which he would drink an ounce and then not want anymore; only to give him a plain hemp milk bottle 15min later and have him suck down 6oz.

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....


  1. 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.


  2. Thanks, we appreciate the prayers....we know we couldn't go on without the strength we receive from all the prayers and support....