We've been doing well the past few days. CheeCha puffs
are going great, and bites of baked potato are without any symptoms at
all!!!!!!
Now with getting a taste for new things, he has started
asking for more things! This little boy has few foods and few words but
he said "chocolate please mommy, yes?" and "ooooohhhhh,
chocolate, yes?" when he climbs up in the cupboard to get it.
What chocolate??? Well, at Easter time is when he
first uttered the words chocolate- we didn't even have any candy in the house
yet so I am not sure where he got the idea from but he looked up at me and said
"chocolate please mommy, yes?" and this smile that would melt an
iceberg....Now, again back to the approach we are at right now with Little Man,
that if we know something isn't UNsafe- even if we weren't planning on
trailing it....we want him to be able to try it- even if it throws a current
trial for a loop, or a pause. FPIES challenges just never seem to end.
We don't want him to have negative associations with food
and we certainly don't want to be keeping potentially safe foods from him- even
if it is "just' chocolate! So, to the store(s) I went....to find
Enjoy Life chocolate chips, which I knew I had found in one of the stores here
in town at one time.
Enjoy Life is a brand that is allergen friendly and many
corn allergic people can tolerate them, although some can not- so we are not
sure if they are safe or not but they are the closest we can come to safe since
other chips have many more allergens in them. Enjoy life has few
ingredients and they make a mini-chip. Well, he was eating a lot of them
and his temper was VERY short (a red flag for us for his calm natured little
boy), other symptoms were popping up too but he was BEGGING for the chips
almost all day long for 2days before his daddy just threw them away- his
symptoms were building and his interest was not lessening so we just told him
they were 'gone'. Well, he proceeded to take the chair and climb
up to the cupboard to check for himself, which is where he found the Hershey's
Cocoa! "oooohhhhh, chocolate, yes?". I don't know if it
is the chocolate or the palm oil/sugar in the Enjoy Life Chocolate chips, or a
corn-tamination or what. So, I figured we've eventually have to finish the
trial with the Hershey's Cocoa (safe for corn allergic)- maybe by baking with
it or something but he wants this cocoa powder today so, I thought I'd let him
have a lick of the cocoa and he'd realize it doesn't taste good and that would
be the end of it. NO!! He LOVES it!?! What?? I did
talk him into mixing it into his hemp milk formula- so it's sorta like a
pudding; but he prefers it DRY! So, over the past few days he's had
bites/licks of this Hershey Cocoa. I can't say it is going great
but it isn't causing any building FPIES symptoms that I would normally be able
to see by now, or the same symptoms as the Enjoy Life chocolate
chips were.
That said, I've hidden the cocoa anyway and am going to have
to just put it on the shelf for a bit because there are too many things in the
picture right now, and I don't want it muddy over chocolate...since there are
some symptoms (that are likely from the chocolate itself, not allergic)- he has
some disturbed sleep and he had an explosive diaper this morning.
Now, I can't say it is all from the cocoa because 2 nights ago, he
spilled his daddy's cup FULL of Mt.Dew and it splashed EVERWHERE (it was all
over him, and some got on his CheeCha puffs -- although I didn't realize that
until later so he may have gotten some Mt.Dew exposure (High fructose CORN
syrup)....his daddy usually drinks diet (which still has corn but not HFCS) but
I had bought him a case of the regular for a treat for his birthday.
Well, I can't be sure little man didn't get some exposure - from being on
his skin or splashed on to some CheeCha puffs he ate, or....I don't know.
He slid downhill these past 2 days, his energy was down, his mood was
sour, he had this weird rash around his belly button (where the soda
splashed??),....and then there is the diapers and the disturbed sleep (from
cocoa or corn-tamination?) OR, is his tube bothering him?
Muddy picture, fast. Back up....let's figure this
out. He is increasing amounts of Alimentum in his hemp milk
formula that he is drinking- he's up to ~15+/day now! (1-2oz. per
bottle)!! Can't be sure that isn't coming into play here also because we
observed building issues with increased amounts of Ali when he was on the NG
tube but we thought that was due to the tube and the lubricant they used to
place it but we still haven't ruled out Alimentum intolerance (worried it is
too high in sugars for him, or maybe the source of fats are a problem for him).
Or, is this all related to tube pain? Possibly. We need to
rule things out one by one. Corn was a potential exposure- symptoms
flared up, we should see them flare back down, back to a baseline...he
obviously hasn't continued to receive Mt.Dew splashes. Cocoa- take it
out and see if things improve. They were improving already this morning,
so I am still not sure what to think. The other factor - the tube or a
abscess or infection brewing, is this belly button rash related to tube or some
random eczema rash? A call to the surgeon's nurse and it is decided he
needs to be seen....
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