My Little Cutie Patootie
Well. I know you all sit anxiously by your computers, just waiting for my latest post to arrive every Monday through Friday, so I know I’ve been letting you down for the last two weeks with my sporadic posting. <grin>
There’s a good reason for my late Zac probiotic update and inconsistent posting, though. In short, I’ve been insane for the last two weeks!
BAD MATH
April 23rd, Darrel asked whether there was any particular reason we were putting Zac’s probiotics in 4 ounces of water, because Zac was having a bit of a hard time taking so much fluid from the medical syringe. I had to answer “Nope. Just did it that way because it made the math easier at first!”
If you remember, we were originally giving him 1/4 of a dose. 4 divided by 4 is 1 – so, 1 ounce! Easy, right? Except we started giving him 1/8 of a dose right away…but, still easy – 1/2 an ounce!
Then we switched to 1/6 of a dose. Still fairly easy – split the difference between the two and you have 3/4 of an ounce.
But when Darrel pointed out the obvious, that Zac was having a rough time with that much liquid, we decided to put the probiotic in a smaller amount of water.
So I put one ounce of water for one dose of probiotic. Then I stared at it, thought really hard (you could smell smoke) and administered the meds.
Almost immediately I had a nagging thought…so I asked Darrel (the resident math/science geek). I talked it out loud to him and he said “Uh, nope. That wasn’t 1/6 of a dose – that was 1/3 of a dose!”
Oops!
Well, it was too late to do anything about it then, so we decided to just watch him and see how a HUGE jump in his probiotics would affect him.
The next day, he was just fine! He took shorter naps that day, but he was in fine spirits and seemed perfectly content. Then, that night, he had a rotten diaper with trace blood – but it had a tree bud in it, so I wrote it off as a reaction to that. We went ahead and gave him 1/3 dose again.
Day 3 of the increased probiotic found him taking great naps, in a great mood, and even walking more! But…he had two horrible diapers that day. Still gave him 1/3 dose again, though, hoping he just needed to push through.
Day 4 was much the same: good naps, good mood, but horrible diapers – and this time one had blood. I was distraught! There was always “stuff” in his diapers, so was he reacting to something he ate? I didn’t know, but decided to drop the dose down to 1/4 of a dose just in case.
The next day was last Saturday, and his diapers looked better. We started thinking it was maybe just a “too much, too fast” push on the probiotics and crossed our fingers.
But then I started thinking…we haven’t really had him at a true “baseline” since October. The probiotics began when his diapers were just “better” – not truly “good”. We know he’s reactive to corn. On the corn-free message boards, the folks there often say that when you first discover you are sensitive to corn and remove all obvious sources of corntamination, you instantly feel “all better”! Then, a few months down the line, your body starts to become sensitive to the minute traces of corn from other sources and you have reactions again.
Was this what was happening to Zac?
I delved into the Corn Boards full-force. And my stomach started dropping into my toes…
WATER, WATER, EVERYWHERE, AND NOT A DROP TO DRINK
I learned that WATER is corntaminated! Water!! The sea salt we use sometimes causes reactions in corn-sensitive people. Potatos and carrots are often sprayed with gases that are corn-laden. The tea bags I use are a known corny item.
So all this time, I thought I was “corn-free” for Zac, and really, I still had traces of it in my diet! How do you remove it all?
More urgently, HOW am I to stay hydrated on the road? My airline switched from serving Crystal Geyser water to using Dasani while I was out on maternity leave. Dasani is filtered through a corn filter, put in a bottle made of corn, and makes every single corn-sensitive person on the boards react horribly!
I can’t carry 4 or more days worth of water with me when I’m flying; the weight would be ridiculous and TSA would have a fit. So I started trying to figure out how to avoid at least the known, obvious corny water when on the road. I spent days asking questions, calling manufacturers and STILL I’m not sure it can be done.
I called Brita and their rep confirmed that there is NO corn in any of their products. Then I reported this conversation to the corn-free people and many of them wrote back that no, they’ve all had reactions to Brita filters (though they did concede that it could be some other ingredient in the filter causing their reaction). If you don’t even know what to ask, how can you get a straight answer from the manufacturer?
So the best I can figure out is to carry a travel Brita bottle with me, buy 3-4 of the large Kleen Kanteens, and filter tap water every day I’m traveling and carry it with me. (Because plastic will absorb corntamination and can never be cleaned of it, so stainless or glass bottles is all I can really use.) Then I only *might* be getting corntamination, whereas if I strictly drank the water I can drink all day for free on the planes, I will *definitely* be getting corntamination.
Ugh.
THANK GOD FOR FOOD JOURNALS
While I was delving into all this corn stuff, we were still watching Zac for reactions. His naps were…okay. Sometimes great, sometimes just so-so. Bedtime was good, but sleeping through the night was just NOT happening. We were back to every 2-2.5 hour wakeups. Diapers were all over the map! Some better than others, but all with some reaction signs.
I looked up this past Tuesday and wondered to myself “How long have his diapers been so rotten?” and realized I had the perfect answer: the Food Journal!
So I whipped it out and started flipping backwards.
And there it was: in black and white, clear and plain as can be…Wednesday April 24. I had forgotten all about this, but not before I wrote it down. We were in the grocery store. While I was loading some produce into a bag, Zac seized the opportunity to wriggle in the cart until he could reach the cilantro and the kiwis I had already selected. I wiped a cilantro leaf out of his mouth (who knows if he actually ate one first or not) and snatched a kiwi out of his mouth – complete with deep teeth marks where he’d been eating/teething on it!
Kiwi attacks!
Well, there you have it! The probiotics may not have been a good thing to “jump” so high, dosage wise, so quickly, but he almost certainly was having a mild reaction to cilantro and/or kiwi!
Whew!
That doesn’t mean that he’s not having a mild, low-grade reaction to corn, but it takes the pressure off of us for figuring that out right now. Because odds are, it was cilantro, kiwi, or increased probiotics.
To begin our sussing out procedure, we switched to corn-free water for his probiotic dose, and I’m trying to find all other possible corntamination in my diet so I can remove those. Then, we’ll just progress from there.
In better news, the last two nights he’s been sleeping GREAT through the night (3-4 hours between wakeups), napping better, and his diapers have gone back to a yellow color with a milder smell and less mucous with no blood.
So it’s working, I think.
I knew FPIES was never going to be easy, but the last two weeks were a reminder to never get complacent in my FPIES diligence. The slightest thing can throw off his behavior and reactions and have me pulling my hair out trying to find out what is wrong!
Keeping food journals is imperative, even for a child that doesn’t eat solid foods yet. Were it not for having a place to write down his accidental ingestions, I would not have seen the connection between his grocery store snack sneaks and his reactions.
Zac-wise, we’re all taking a big deep breath and a sigh of relief that we are still actually on the right track and waiting for some “good diapers” to appear so we can increase the probiotics again.
MEANWHILE, BACK AT THE CAMP
We’ve managed to trial Jed on asparagus again, and its a pass! He’s not able to just eat as much as he’d like, but a small serving once or twice a week should be just fine for him. Yippee!!
My grandmother had another episode like the one we traveled down for over Easter, and this time they tried to do a heart cath. They were unsuccessful, due to the large blockage in her arteries. So they decided the best thing was to put her on hospice care. The whole family is trying to digest that news.
My parents are trying to get their house packed up and moved up here so they can watch the kids when I go back to work, but they seem to be constantly battling against “life”, which is hell-bent on interfering in their plans.
And all of this together is a very long-winded way of saying that I’ve been actively losing my mind and fighting to keep it together the last two weeks, and that is why I dropped the ball so badly on posting here.
I dropped the ball on a lot of things the last two weeks, so now I’ll be playing catch-up as fast as I can. That means you may be seeing double posts some days, because I actually have some cool things to share with you that I just didn’t get around to doing in a timely manner. Hope that’s not too annoying for you!
And I’m working hard on some great recipes that I hope to share soon, so stay tuned!
