Since day one, feeding has been an issue for Keira. But last
year, we were at a pivotal point when she was in the hospital and having a
horrible time with digestion. We figured it was as good a time as any to try
out this new-fangled formula that the dietician had been telling me about since
before it was on the market.
I hadn’t been willing to make a change before. Even though
the formula we were using, like most “medical food” has an ingredient list that
begins with corn syrup and from there has a long list of words I can’t
pronounce. I actually came across an article once about a group of people
protesting the food, saying “I wouldn’t feed this to my animals.” It was
keeping her alive. I wasn’t going to mess with it. But now she was in the hospital, not keeping
anything down, producing more acid and bile and having a reaction that left a
lot of blood in her stomach. The new formula was worth a try.
The new stuff was/is made of whole foods. It has about 10
ingredients, and all are things that I could probably grow in my own back yard.
Completely organic, whole food, and approved
by the FDA and covered by insurance.
The stuff is edible, but is intended for tube feeding. It smells a bit like
chicken soup and looks like baby food. The switch went well. Keira seemed to
digest it just fine and within a few weeks, even though she was technically
consuming fewer calories than she had with the previous formula, she was gaining weight. Her body does a better
job of utilizing real food than chemical food. Go figure.
So it’s been wonderful, with just a bit of a drawback. This
formula, because it is real food, varies in consistency a bit. Some packages
seem oilier. Some are a bit thicker. For the first few months, we fed Keira
without a hitch. After a while, it was trickier, as the food that typically
flows pretty rapidly from the open syringe, through the feeding tube, and into
her stomach seemed to keep getting plugged up. I thought the problem might be
her button, so I switched that out. I thought it might be that the tubes and
syringes were old, so I switched them out. Nothing seemed to improve the flow.
When my mom or I am feeding her, it’s not a huge deal, frankly, because we blow
into the top of the syringe to get it going again. But of course this isn’t a
trick that’s condoned of any professional sorts, so the caregivers, therapists
and teachers are left with a clogged feeding tube. They have to use the plunger
on the syringe and sometimes that gets stuck, too, so they have to unhook it
from Keira, squirt some food into a cup to try to dislodge the clog, hook it
back up to Keira to resume feeding and repeat. And repeat. It’s a genuine pain,
yes, and sometimes it’s worse than others.
Last time we went to the GI doc, I filled him in. I told him
that we are really happy with the food, but that after a few months the food
seemed to get clogged much more often. “You are the 5th family, now,
to tell me the same thing!” he said. “I actually have been in contact with the
guy at the company about it. He said that due to variations in the soil and the
weather and different things, and because it’s real food, there are going to be
some variations. But he’s interested in the pattern I’m seeing. He’d like to
talk to a parent. Would you be up to giving him a call? None of the other
parents are in a place where I felt I could ask them.” I told him I’d be happy
to and he sent me home with the phone number and email of one of the company
directors.
A few weeks passed before I made good on my promise, but I
did finally email the director. I told him about the pattern that I had seen
and said that it can be frustrating to the various people who feed her, but
that the issue is not significant enough for me to want to change formulas,
because overall we are really happy with it. I asked him if there was any way I
could help.
The next morning, I had an email back from the director. He
thanked me for my email and recounted what the GI had already told me about the
natural variations in the all-natural product. “That said,” he continued, “we
want the product to stay within certain speculations and if it’s not, we need
to do something about that.” He asked if I would be willing to send him some of
the product the next time I encountered a batch that seemed particularly
problematic so that he could test it. He would compensate me for my trouble
with free product.
This would be a hassle for me, yes, but it’s one of those
things that sometimes happens in parenting Keira, where I feel like maybe my
participation is making the world a better place for the next person in my
shoes. I was satisfied with the response.
A couple of days later, though… a couple of days later I get
another email, I guess from another director of the company (she had been CCed
on the previous emails). First, she says, she wants to know if we are using a
regular rubber tipped plunger to feed Keira because if we are, it will be “nearly
impossible.” That’s why, she says, most people use these o-ring syringes or
squirrel syringes. She included a link. She went on to explain defensively that
the viscosity of their formula will not match other formulas because there is
no corn syrup in their formula whatsoever. “What we find,” she said, “is that
when people complain about our product, the problem really isn’t our product,
it’s the syringe they are using.”
Also, and she was clear to specifically address the GI
doctor here, too. She wanted to know whether I was using a blender when I was
mixing the product with water. We “always
advise blending it because oil and water don’t mix.”
I’m already angry, feeling like I’ve just been lectured as
if I am not capable of basic problem solving. “Oil and water don’t mix.” No,
sh#*, Sherlock. Though she had given me two tips that I hadn’t tried, if she
was so sure of their importance, then why wasn’t it on the packaging? I was
already wanting to send a nasty retort, but first, I thought, I should check
out what these syringes are.
You’ve got to be kidding me. The squirrel syringe is
literally that. A syringe for SQUIRRELS. The website is all about taking care
of squirrels. The FAQs cover what to do if you capture an injured squirrel in
your yard, and what to do if your squirrel has mange or fleas. They tout the “miracle
nipple” for bottle- feeding these animals and… there they are, the squirrel
syringes. They look very much like the syringes that I get from the medical
supply store, with a slight variation to the plunger and they are available in
larger sizes.
Wow. Just wow. There are so many places I could go with
this. The company of the MEDICAL food I buy just sent me to a pet care website
to help feed my daughter. Plus, they essentially said, “that’s what all the
knowing parents do.” Her condescending attitude aside, should I be concerned
that said syringes aren’t medical grade? That they aren’t covered by insurance?
($4.95 each plus $7.50 shipping and handling) Let alone the implications of the
fact that this is a website for PETS? For ANIMALS? We have a hard enough time
as a society, making sure that kids like Keira are treated like the living,
breathing, feeling human beings that they are. Good grief. And if you’re a
medical company that wants people to buy your product and you believe that you
need these special implements, then why don’t you say so? Better yet, why not work
that into a branch of your company so that we can get the syringes from your medical company rather than a pet store.
I was livid and simultaneously thought this was hilarious.
In a half restrained manner, I returned her email, thanking her for the two
tips that were news to me then said, “Frankly, I find this pretty frustrating.
If you believe that this is something I should “always” do and without it would
be “nearly impossible” to feed my daughter, then I think you should strongly
consider including this information on your packaging.
Not yet satisfied, I sent an email to the GI doctor alone.
Syringes for feeding squirrels! Of course!
Why didn’t I think of that? (I’m so annoyed)
To which he responded:
What the what?! I’ve never heard of
a squirrel syringe! Is that even a thing?!
And I couldn’t agree with you more
that before they can claim that they always (love the bold font) recommend
anything, then they should make sure that their product information and website
clearly states as such. And maybe some education for us non-veterinarian
trained physicians and dieticians would help too.
To which I responded.
Totally a thing. See link below.
How demeaning. (I’m going to go buy some now.)
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