So. On Monday I mentioned the Big Fall Revitalization Project our family is undertaking. We cleared out toys and are clearing out junk from the house to keep it safer and cleaner for Zac.
We’re giving him some gut rest before trialing more foods, too.
We’re getting desperate. There aren’t many kiddos with FPIES out there who are 16 months old with NO safe foods. Some, but not many.
If Zac had to be rare and unique, I’d rather it be for ball playing or sax blowing skills, not for being completely unable to safely process foods.
Aside from not being able to safely eat, he’s doing incredibly well. He’s happy, he’s developing, he’s finally babbling and trying to form words, he’s got GREAT skills with a ball (seriously almost as good as his big brother already), and he’s a fantastic sleeper – most of the time.
But he’s not growing. And he’s not getting enough nutrition.
The question of the day is: WHY?
Why can’t his little body handle food?
Darrel and I have discussed this for hours and hours over the last month or so, and we still don’t have an answer. Nobody does, after all.
We have theories, though.
One is the “bucket” theory. This theory is based on the idea that an allergic person has a metaphorical “bucket” that represents the amount of triggers their body can handle before overflowing and causing reactions. As long as the amount of irritants is kept at a low enough influx to stay in the bucket while the body processes and removes it, they can function perfectly fine with little or no ill effects.
This is an especially common theory in the FructMal world. It explains why someone with FructMal can handle ten stalks of asparagus or 1/4 c. of onion in a dish, but not both at the same time. Both together overflow that persons threshold “bucket”.
So perhaps, just perhaps, Zac’s little “bucket” is kept constantly almost full. Not enough to overflow and cause a reaction we can truly see, but full enough that the slightest addition creates overflow, and causes FPIES reactions.
Hell, it’s as good a theory as any, right? With the lack of confirmed medical information about FPIES out there, sometimes you have to go solo on these things.
Lots of FPIES Mama’s report that they’ve had to remove what was considered a “safe food” from their child’s diet for some reason or another, and that once they did so, their child began passing food right and left. When the suspicious food was reintroduced, their child stopped passing foods.
OK. Good theory. Now, to test the hypothesis!
How, though? He’s not eating anything yet! All he’s eating is breast milk! And my diet is working for him, right?
Well, not so fast, there, Kemosabe. Maybe it is working for him; but maybe it’s working for him, but keeping his “bucket” almost full.
So I started investigating my diet more carefully.
To start with…potato chips.
Many, many months ago, I discovered a gem at the health food co-op: olive oil and sea salt potato chips. Ingredients: potatos, olive oil, sea salt.
Three things that happen to be on my diet.
I think I actually did a happy dance right there in the store! Finally, a snack food – ANY food – I could eat that I didn’t have to make myself from scratch! Hooray!
Since then, I’ve eaten those potato chips every single day. Sometimes a whole bag in a day!
When I found them, I assumed they were safe. My FPIES food knowledge was still growing, and I didn’t yet know about olive oil adulteration, sea salt contamination, or even much about cross-contamination in production facilities.
When I *did* learn about those things, well, I buried my head in the sand. I didn’t want to lose such an easy, delicious food, and Zac didn’t seem to have any problems with my regular consumption of the chips. So I told myself that IF they had issues, they were slight issues that weren’t causing any problems for my son. So the chips were staying.
Now, I’m re-thinking everything I eat…so I called the manufacturer.
Turns out, my health food co-op only carries one kind of this manufacturers potato chips. In reality, they make MANY flavors of chips! The lovely rep on the phone informed me that they are all produced in the same facility, on the same lines, and the lines are cleaned thoroughly between runs.
One of their chips does have dairy in the flavoring ingredients, and they use olive or avocado oils on all their chips. She assured me their olive oil was pure, but could not tell me where it was sourced from. Without that information, I’m hesitant to take her word for it, after all I’ve learned about olive oil adulteration this year.
Not to mention, whatever they use to clean the lines between runs is likely corn-derived; corn-derived cleaning agents are common in food production.
Whichever way you cut it, the chips are out. I ate my last bag this weekend and am seriously mourning their loss.
Next stop: my potatos!
I’ve been using Organic Potatos this whole year, thinking that made them safe. These potatos even sprout – quite robustly at times! So surely they haven’t even been sprayed with the ‘no bud’ spray commonly used on potatos, right?
I called the company on the potato bag and spoke with another lovely lady. After explaining why I was calling, she said “Well, I don’t think you’re going to like what I’m going to tell you.”
While organic potatos are not sprayed with any chemicals, there are “applications” that ARE allowed to be used on organically farmed products. She said she would call her farmers and get the names of the applications used on these potatos, but that it was likely that there is some corn derivative in at least one of them.
Not to mention, she added, the bags the potatos come in are likely made of corn.
@$%^*& #$%^& @!@#!&
(That was self-censorship. You wouldn’t like to hear the words I had running through my mind at that moment.)
I eat an OBSCENE amount of potatos! Darrel and I did the math on it, and a 50 pound bag of potatos lasts us only about 3 weeks. That’s just under 20 pounds a week! And that will surely increase, as I can no longer eat those lovely, delicious potato chips!
Well, it’s potato season, right? So I started researching yesterday to find someplace I could buy about 1,000 pounds of un-jacked-with potatos.
I put out a plea for help on Facebook.
I was told I need to become an organic farmer.
I put out a plea for help on the Corn-free boards on Facebook.
I was told to find a local farmer and stock up, but that I wouldn’t find any safe potatos at ANY store.
I went to localharvest.org and found a farmer one town over. I called him.
You know, when you’re talking to a potato farmer, and you tell him you need 1,000 pounds of potatos, and he says “WOW! What are you going to do with all those potatos??”, you start to realize JUST how insane FPIES has made your life.
Especially when I answered “Um, eat them.” and his only response was “Huh? A thousand pounds? How?”
He told me that he’d already sold all his potatos, and most local farmers would probably be in the same situation. The best advice he could give was to be at the Farmers Market and ask around. Which I will do.
Thursday morning, I’ll be dragging the kids around the Square at 6 in the dad-gummed morning trying to find someone who’ll take an obscene amount of money from me in exchange for an obscene amount of potatos.
I feel like I’m in a bizarre alternate universe where potatos are gold and I’m on a treasure hunt.
Darrel and I talked it over, and we both agree that the best thing for us to do is grow potatos ourselves. One problem: the farmer I talked to? Said that it would take AT LEAST an ACRE to grow that many potatos.
That’s a helluva lot of potato plants, right there. And I’m going to be putting up Military Prison style fencing around it to protect those puppies from the deer, rabbits, and other assorted critters that would nibble on my sons’ life-sustaining tubers.
So, my education in growing potatos is about to begin, and in the meantime, I’ll keep researching where to find safe potatos.
Anyone know of someone who grows a s**tload of potatos without any sprays, chemicals, or corn products that’s willing to sell? (And in case you don’t know, s**tload is a purely Texan word for “more than any reasonable person would ever need or use”. It seemed appropriate here.)
Next stop: Tea.
I learned a long time ago that decaffeinated tea and coffee is decaffeinated through a process that uses corn. I also knew that the tea bags are 99.9% surely made of corn.
Again, since Zac didn’t seem to have any big reactions to it, I felt comfortable leaving it in my diet.
Now, I’m removing anything that could be causing that “bucket” of his to stay nearly full.
Oh, I guess I could trial a new tea, and maybe I will. But for now?
I’m drinking water.
I hate plain water.
And not just any water; I have to make sure it’s corn-free water. So I’m limited there, too.
That’s more than enough for today, but there are still MORE things we’re doing to try and get Zac to baseline and keep him there (and drain his little “bucket” while we’re at it.)
What extremes have you gone to for your kids? Please, share your stories! I’m starting to feel like a twitchy paranoid, here!