We have no new foods, and we have put ProViMin aside.
Something was causing full allergic colitis. We started by
checking labs and stools and correlating the ProViMin (increased and
decreased) intakes to the results. The first weeks it was evident
something was going on but, just as we were left guessing with his symptoms and
ups and downs, the labs/stools left us guessing a bit too....was it leftover
from Alimentum RTF? Alimentum caused full enteropathy: reflux, villi
damage, decreased ability to digest sugars, large stools, dumping proteins,
malabsorbing calories and blood in stools. It did not cause the vomit
issues we have seen with his reactions, so it was either something trace or
broken down and it didn't seem to be flaring his enterocolitis. But
enteropathy is just as bad- just not as sudden. It took us months to
determine that yes, he was in fact reacting to the Alimentum. I didn't
want that to happen again so we were taking the ProViMin cautiously but so many
good signs were there too, initially. ProViMin has less broken down dairy (from
hydrolyzed dairy proteins to a piece of a full dairy protein - sodium
caseinate) and yet his enteropathy was flaring down, his body was beginning to
absorb nutrients again and his hemoglobin that was declining had picked back
up....but his iron stores tanked again and his protein stores were not picking
back up. Did we just need more time? Did we just need to
push the ProViMin more?
So, we came back from camping and I pushed the ProViMin-
anytime he was sitting down or started acting up, I would ask if he wanted a
bottle; I would sit with him if I needed to get him to sit still and take a
bottle. We did dream feeds (where we feed him in his sleep) and he would
wake up 1-3x/night to eat himself. He was getting ProViMin around the
clock. Things should be improving if he was merely recovering from
Alimentum.
My theory was that while recovering from Alimentum enteropathy,
his body wasn't fully accepting the ProViMin either. My instincts were
right.
His body has been having allergic colitis from the ProViMin.
I'm not sure when that kicked in, or if it's been there the whole time
because he did seem to be doing ok on it at first, but then he slowly began to
get more fatigued and have poor color, he gets this subtle cyanosis around his
lips when his intestinal inflammation is "triggered" - it comes and
goes if he is getting the protein throughout the day (such as in his bottle);
or it will flare up for a few hours if we are trialing a food. It's
beginning to be a good red flag for us....but I can't stop the food on just
that alone, I (unfortunately) need symptoms to add up.
When we got back from camping, we were turning in samples
and going to the lab- one Friday's lab results revealed a "spike" in
his normal- he had Eosinophils in his blood and his hemoglobin was dropping,
Ferritin was quite low as well. His stools from a few days (week) prior
had a significant jump in the markers for inflammation. Something isn't
right. The GI called and she was alarmed at the results and felt
that it confirmed he was reacting to the ProViMin. Her thoughts were that
we needed to stop the ProViMin and get him scheduled for an admission to re-start
TPN (total parental nutrition via an IV). She has no other idea's on why his body can not accept food right now. It is the
answer that she knows will keep his body alive and his brain fed the nutrients
it needs. I know she is just looking out for his needs- both in the now
(stop the ProViMin because it's hurting him) and in the future (provide
nutrients via TPN so his brain doesn't suffer later); but I just can't help but
ask myself if we are doing the right things...do we look further? Do we go
somewhere else for 2nd/3rd opinions? Do we put him through new tests and
hospital stays and who-knows-what-else? Or, do we just do what we know to
do and stay home. I don't yet know that answer, I've been praying
and praying about it. I just can't see through this muddy dark tunnel.
For the immediate needs, hubby and I talked about it and we
decided a few things. One is that he wasn't as sick as he has been in
the past and we still aren't sure it is the ProViMin. He seems to be
getting more and more corn sensitive, so maybe he got "corned" the
day of the stool tests- his diapers that he has always been ok with are now
causing rashes (diapers typically have corn starch in the liner, he has always
seemed to tolerate Pampers baby dry) so we switched diapers and wipes (7th
Generation diapers- tolerates MUCH better) and Waterwipes wipes...which are on
the fence of tolerance but a significant improvement over the wipes I've been
using with all the corn-y ingredients. Also, a few days before the lab
draw that showed the significant changes, he had had butter and a lick of
yogurt (planned introductions to be "push" dairy to see if that is
what he was reacting to in the ProViMin and both I had hoped from my research,
would be corn free but wasn't positive), he also ate a good portion of pork
(same night as the yogurt). A few days prior to that, he had LICKED a
paint brush while painting!! No idea why he did that, took us completely
off guard because he hasn't done that since he was a baby. Any one, or
all, of these things could throw these test results. The GI was calling
me on a Friday afternoon, before she was to leave town for a week with this
news. So, we decided it would be best to wait out the week-
continue the ProViMin but do nothing else (no paints!) and see what the next
weeks test results would be. It was a rough week, giving him something we
weren't sure if it was safe and that looked to be more and more unsafe but we
also talked about doing an endoscopy before taking him off the ProViMin if the
blood showed eosinophils again. Eosinophils in the blood doesn't
automatically mean EGID (eosinophilic gastrointestinal disorder) but it could
and I don't want to miss this "snapshot" of his body telling us
something. We waited until the next Monday (when the GI doctor was back)
to do the labs. That morning, middle of the night, I gave him a bottle
with an increased dose of ProViMin- timed so that it would be about 6hrs.
before the lab draw....to see if the snapshot could tell us something,
anything.
The increased ProViMIn did not spike his eosinophils again,
those returned to normal levels in his blood. So, the spike of labs in
that direction seemed more likely from the butter, yogurt, pork or paints- not from the
ProViMin, so that was a relief. But, this blood showed a drop in
Neutrophils (white blood cells that during an acute reaction elevate but during
a chronic reaction for him, they decline- like his body is fighting something
and depleted (chronically). He's even been on neutropenic precautions at
the hospital before when he's chronically reacting (because these levels look
like a little boy susceptible to every illness- a body fighting hard to keep
those illnesses out that it depletes it's stores, chronically). His
hemoglobin did pick back up a bit but his iron stores continue to drop and his
protein stores are not picking back up. The blood in his stool samples
continues to worsen but the inflammatory markers are improved. The GI
and I agree that this is allergic colitis; that although it is easier to manage
than enteropathy or enterocolitis (in comparison to the two), it is not
something we can continue to subject him too- it will only continue to get
worse; and any "hit" to his system will flare it so significantly, he
will end up needing a blood transfusion. We need to find a new path, a
different path that he can thrive on....but where does that path lie?
TPN is the answer from the GI. New food challenges
and time is ours. Which one will be the solution, we are not sure.
TPN would meet his nutrient needs, but TPN is not free of
his allergens (corn and soy). We could potentially leave the soy out
(that is in the lipids-the fats), since he takes a diet orally- we can give him
fats orally (which he gets in hemp milk and safflower oil); but we can not
leave the glucose/dextrose out- it is the "rider" for delivery of the
nutrients. What does a corn allergic person do? I'm not sure.
Maybe we will need to explore that, but first- we owe him to try a few
other things....
But his allergy is a GI allergy and shouldn't be affected by
the TPN ingredients, right? Well, the whole time he was on TPN, he had
villi damage....so his gut was getting "hit". Also, he
regressed, significantly. I saw it happening while he was on TPN but I
noticed it even more dramatically once he came off. He has underlying
sensory issues that come out (significantly) when he is reacting a food.
Well, on TPN they stayed around all day long and his body couldn't cope with
it. He began to be very specific in his needs, we had to keep the house
dark, he didn't want anyone touching him, his language had halted and was
starting to go backwards....everything was in a heightened state interfering
with his quality of life, and ours. It's not the ideal situation.
However, he did gain weight, his hair grew, he expanded his developments
(even though his sensory issues kept him from practicing them, they were
there). I know that if his body can not absorb nutrients any other way,
we will have to do it - we just need to know that is the right option.
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