He’s worth it. My handsome little huggy-bear.
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.
For the record, these are delicious, healthy, and very much REAL FOOD. I can’t endorse this product enough…unless you’re an FPIES family.
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!
Remember this? This is how we buy potatos currently.
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.”
Ugh.
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.
Bloody hell.
@$%^*& #$%^& @!@#!&
(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.
It’s absurd!
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.
Including tea.
Oh, I guess I could trial a new tea, and maybe I will. But for now?
I’m drinking water.
Water sucks.
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.
Ugh.
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!
WHY would you want to steal my life??? But seriously…this is like Deja vu (can’t figure out how to put the accents on here). I’m SO Sorry!! I know that mode very well; it’s called What the hell else is there left to get rid of? Annd, then you find *just one more* thing you can eliminate and hope & pray it works! Going over everything we cut out, people said it was “extreme”. Well, maybe, but Mighty Mouse gained about 6 pounds in 4 months!! I told them they could stick in there juice box and suck it (in not so many words) 😛
What are the symptoms involved with failing the foods or not gaining weight? Is it just gastro or are there IgE or IgE-looking symptoms thrown in there too? I’ve learned how to “trick” A’s bucket into thinking it has a lot of room left lol. You might be doing everything we already are too, but just in case…here goes.
1.) We have him on an h1/h2 combo (compounded corn-free)
2.) Gastrocrom is always a good things to ask a gi about to get a little boost
3.) We eliminated everything possible. Diapers are seventh generation (use wood-pulp and not corn)
4.) olive oil and cotton balls for ointments, calming down rashes (mast cell stabilizer)
5.) wipes are Derma H20 wipes with grapefruit seed oil (also mast cell stabilizer). We also use these to wipe him down or clean things he’ll touch. That way we know it’s safe. We follow it with homemade cleaner- pretty much like your citrus cleaner.
6.) All plastic was removed!! BIG deal, but it helped a ton!
Cups are silicone
utensils are metal, bowls and containers are metal/silicone
7.) Mighty Nest has become our best friend for finding “safe” alternatives
8.) switch clothes to 100% cotton or if it’s a blend, at least 75% cotton. Fibers matter.
9.) Our medical kiddos spend a lot of time in car seats and strollers…cover these with cotton material (especially all plastic pieces that can be held or touched)
10.) Containers that hold toys, we replaced with just cardboard boxes. Granted, we won’t win any interior decorating contest, but there’s a lot less puking and stains 😉
11.) All food gets washed, scrubbed, and then peeled (with a potato peeler). Pigment can cause just as much build up in the bucket. He’s never allowed to eat the peel on potatoes just because I don’t know where it comes from, but we do make fries (with sea salt and olive oil) and he does eat them mashed (same way).
12.) If he seems to be having more FPIES reactions than others, try always keeping a batch of pedialyte always on hand and giving him a few ounces (just water, sea salt, and cane sugar) before he gets his food. There might be some kind of autonomic dysfunction that’s causing the problem at the time.
13.) All sea salt isn’t the same either. A can only handle the “coarse” kind for some reason. Not sure if there’s a way to check all of that on store bought products.
**This is not to assume that you haven’t already done any of this, just wanted to share in case it helped. I know people sometimes mention something I never even thought of…so just in case. The potato thing Definitely SUCKS!! You’re doing Everything possible in your power, and I know you’ll get through this!! Hang in there 🙂
LOL Love it! Yes, “what the hell else is there left to get rid of” pretty much sums it up. Although, your list is VERY extreme! Frankly, I’m a little overwhelmed reading it. Definitely LOTS to consider!
So…
1. What is an h1/h2 combo?
2. What does Gastrocrom do?
3. Guess I need to get back into cloth diapers, no matter how overloaded it makes me.
4. We don’t seem to have a lot of rashes, except diaper rashes when he’s reacting.
5. Grapefruit seed oil, huh? Is that something he could react FPIES style to? I’ve been in desperate need of something to wipe his hands and things he contacts that is safe.
6. ALL plastic? Even toys? Why did that help? My stomach is dropping to my toes in horror at that thought…NO THOMAS TRAINS? DEAR GOD HELP US ALL!
7. What is Mighty Nest?
8. Really? The clothing fiber mattered? How was it affecting everything?
9. Did you cover the seat belt latches in the car seat, too?
10. Cardboard boxes are a surefire way to give Zac major FPIES reactions. Anything paper, he eats. Anything paper that he eats, gives him – at the least – acidic, butt-burning diaper rashes, or full-fledged vomiting reactions, depending on the paper. Have any other ideas?
11. What do you wash your veggies with? Just water?
12. I’ve been scared to try anything remotely pedialyte in nature, even the homemade ones.
13. I know not all sea salt is created equal. On the corn boards, it seems like the brand we’ve been using is one of the safest, non-reactive types out there. It’s Redmonds Real Salt. We’ve been using the Fine Salt for seasoning at the table, and the coarse blend during cooking. Maybe we should get a salt grinder and use the coarse one all the time…I’ve heard some people say they have reactions to the fine salt. Thanks for the reminder!
I appreciate your input – there are some things here I’ve considered and not pursued, and lots of things I’d never considered at all! Thanks for the food for thought! You’re an awesome Mama!
Don’t have much besides A: you make me laugh and B: yea I’ve been there! And C: wow they use corn to decaf stuff! WOW! Well that expains the fail to caffeine free diet coke! While we do have several safe foods we are one of those FructMal people you talked about and we do get a full bucket at times! Usually apples, not sure why apples but that is the fruit that will send us over the edge! And not just any kind..we can eat the red delicious ones.. not the other kind.. weird I know! Anyway, just wanted to send cyber hugs and say that you are doing it right! And that at the very least you make it somewhat entertaining!
Hi Katrina!
A. Thanks! B. Whew! Glad I’m not alone! C. Yes – it’s a shocker, right?
Apples are WAY high in fructose – they are one of the worst offenders and I’m so sad my little Jed can’t have those any more. He LOVED apples back in the day before we knew what fructose did to his body. 🙁
Thanks for the hugs and the kind words. 🙂
Both Jeremy and Sydney can do potatoes but not potato chips or fries. There is a chemical called acrylamide that is formed when starches are fried. It upsets both of their systems mightily. I mention it because sometimes the cooking process makes new problems. Food (process) for thought?
Oy. More food issues to think about? LOL I might have to talk to you about this a little more. Thanks!
OK this is weird but do you still have that amber teething necklace on him like in the photo? They’re scientifically proven to do absolutely nothing that could *possibly* have *any* effect on teething (they probably work by a placebo-effect working on the adults!), and even if that’s not true the only way they possibly might help involves seeping out unknown chemicals which … well, you already know how Zac is with unknown chemicals.
I remember when you posted about using them the first time and it worried me because here in Australia we’ve had a few kids choke on them so there are safety advisories around the place reminding people they have no actual effect beyond placebo.
I really hope that your changes pay off. Sending you Aussie sunshine and love.
Hey Ricky!
We looked into the science behind the necklaces when we first considered using them, so we know there is no scientific evidence indicating they work. We honestly had simply reached the point where we had NOTHING else we could do for Zac for pain and figured “Why not?”
The placebo effect works, definitely, and maybe that’s why Darrel reports feeling better when he wears one, but the placebo effect does not account for why Zac stops crying within an hour of having his necklace on when he’s in pain. He’s still too little to ‘believe something will work’ until it does. So I do think they actually do something that helps with pain.
While I do believe in their effectiveness, you did bring up one point that makes me think: unknown chemicals. Sigh. We have taken the necklace off over the last couple days as a result of your comment. We had been letting him wear it non-stop, but Darrel pointed out that we might take it off and see how he does. We can always put it back on him for pain relief, if necessary.
So far, he’s waking up twice as often throughout the night. That doesn’t make me happy. But…maybe it will help with the whole finding safe foods thing? Then it would be worth it.
Thanks for the input – and we could use your Aussie sunshine and love any day!
You probably don’t want to introduce anything new into the mix, but considering how much you dislike drinking plain water, maybe you can grow your own organic herbs for tea? I grow orange mint and parsley year round and “brew” jars of caffeine-free flavored water by steeping the fresh herbs in hot water.
And Jeshyr – you may be right about the amber necklaces only having a placebo effect, but I have to say, that effect is clearly pretty strong for me. I’ve been wearing one for a few months now and have noticed a tremendous difference. 🙂
Mmm…orange mint sounds yummy! Sigh…I really would love something other than plain water, but if I’m going to introduce something new into the mix, it really needs to be a veggie for my health. One day, though…one day.
Actually, I stopped focusing on herbs in my garden a while back, but I used to grow spearmint. That was WONDERFUL for teas! Maybe I’ll start doing that again; at least I could dry it and have it available for when I *can* add things back to my diet. Thanks for the reminder!
This summer we tried growing potatoes in a laundry basket. I know this wouldn’t help you until next year, but it’s something to keep in mind. :O) We got some crazy looks from family and friends, but it worked. Here’s a blog post that tells the basics of what we did. We didn’t do the hilling method, we just put them there in layers at one time and it worked fine. And if you use a tall laundry basket you will get more use out of your available space. We ended up harvesting ours a bit too early since it was a trial run for us, but the potatoes were very good, just not huge. We netted 10 pounds from one basket, but if we had let them stay longer and watered better it would have been three times that.
http://preparednessmama.com/grow-potatoes/
Hey Hollye! I’ve heard about growing potatos in a laundry basket before, but never actually knew anyone who had done that. Before she passed, my Nana had started growing potatos above ground with just lots of straw as bedding. There are so many clever ways to do things sometimes! I will definitely consider the laundry basket idea come next spring. Fortunately, I have some time to brush up on my potato growing knowledge before it’s time to plant. 🙂
Thanks for the link, too – interesting stuff on that website!!
Such a great post, wow, you have such a challenge with this…and corn is found in SO many formulas, I know that as a feeding therapist with a list of all of the formulas containing corn, almost all of them, so you just have to wonder how many little ones out there that don’t have a diagnosis yet are reacting to the many formulas that they have been on!
Corn is evil. 🙂
Yeah, I’ve often wondered how many kiddos have food intolerances or allergies that don’t get diagnosed properly, and instead are labeled “high needs” or “colicky”. It’s sad and scary, but even worse when you realize there’s not much that can be done to avoid corn in a formula. They ALL have corn in them, in some way. The govt. needs to stop subsidizing corn the way they do; it’s not normal to eat so much of one ingredient. Our bodies aren’t set up for it.
Not to mention it’s almost all GMO…
I love what you’re doing on your blog and in your work! You’re awesome! Thanks for stopping by. 🙂
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