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."

Monday, May 7, 2012

Good Streak comes to a halt....

Still hoping these symptoms are from the lubricant but we're in the mind game time when I start to question everything in his diet and environment....I just want him to not suffer and be a happy little boy.   Seeing him suffer or struggle is so very hard on a mom.   Not being able to stop it or know exactly what it is from to know if I'm doing everything I possibly can to help him through it is even worse.   And that is where we are at.....

We restarted the Alimentum and it seemed to be going well- clearly benefiting from the increase in nutrients (B vitamins, iron, Vit.C) he needs in his diet and the increased energy that comes with that; but there were subtle signs that had been there in the past with introduction of Alimentum as well (rosy cheeks, little bite looking spots, a washed out look, not gaining weight despite eating more and getting more calories, questionable look and smell to stools) but these aren't necessarily FPIES responses for him.  Are they his carbohydrate intolerance, if so, it is more that they are intolerance symptoms and that although bothersome- they wouldn't be doing the "damage" an FPIES reaction does.  Are they enteropathy (FPIE) symptoms/reactions?   We just can't be sure yet, and the good was outweighing the bad so we are content for now, to "ride the line".   

The Chee-Cha puffs are still going well and I ordered some potato flour and potato starch to start playing around adding that to his millet flour to bake him more things.  We stopped (hid) the chocolate- I think it's safe to say that chocolate itself (Hershey's Cocoa) can be added to his safe list but he was OBSESSED with it and was eating way too much- so he was getting the effects from that (some hyperactivity and loose stools- seriously, he was eating spoonfuls of the pure cocoa powder!).   So, that went on the shelf for now, until I have more things to mix it into so he eats the food I mix it into and not just the powder!! 

Riding along the line.....then comes the lubricant (spoke about in last post) and we saw immediate flushing and tantrums that night followed by 3 days of loose, large stools, followed by some really questionable looking stools (was that a blood clot? is that blood mixed in? what is that smell?).   The boys thought the smell was like "burned plastic".   We're guessing it is the lubricant working it's way through his system....and now we recover from that.   With a sensitive gut that is not tolerating safe foods- Alimentum is causing symptoms, potato flour and starch (given over the last 2-3 days) are causing symptoms,....he is not sleeping well and last night he was up every hour or so and then gave up and got up for the day at 4am.  Not.good.signs.  So the guessing games begin....issues with Alimentum (sugars, soy oil)?   Reactions to the potato flour or starch (cross contamination with the brand- King Arthur's), or all just sensitive because of his inflamed gut??

And then there is the tube....the tube change was successful and it looked GOOD at first, then the lubricant issues kicked in and we held off using it became clearly painful for him again- bleeding and oozing and inflamed granulation tissue again.  

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

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