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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