To Quinoa, or Not to Quinoa…(of Buckets & Baseline)

Well, I think we might just be losing our minds. Or maybe it’s just a case of “desperate times calls for desperate measures”.

In either case, Darrel and I had some intense discussions this weekend and have basically decided…”to hell with baseline” and “screw gut rest”.

Baseline has been, thus far, my seemingly unattainable goal for Zac for almost as long as he’s had his diagnosis.

Baseline is what all FPIES families shoot for.

Baseline is the Golden Goose.

And we’ve basically decided to let go of that dream.

Not because we don’t want it! Oh, no! We WANT baseline for Zac with every fiber of our being.

We just finally faced reality: as long as he is teething and eating everything he can find off the floor, we will NOT find baseline.

Ever since we decided to shoot for baseline and gut rest, we have been sorely disappointed with the results. Every week since then, Zac has had at least a mild reaction to something he’s eaten off the floor.

Crickets. We find parts of crickets regularly – and on two occasions – mostly whole crickets in his diapers.

Leaves. Grass. Bits of plastic from toys we deemed “safe” (this child has AMAZING jaw strength!).

All of these things give him unpleasant symptoms: diarrhea, stomach cramps, mucousy stool, bloody stool.

Which leads me back my original statement: we have thrown in the towel.

Until such time as we can replace the carpet and close in the front porch to be shoe free, we will continue to track ‘stuff’ into the house and it will continue to blend into the carpet so well that, even though I clean the floors daily, whatever I don’t see will be “Roomba-d” up by Mr. Zac.

So, logic says, if we can’t get him to baseline and he will have constant reactions to something, wouldn’t it be better for him to be getting at least some nutrition from a food while he reacts?

So today I’m making him quinoa crackers. We’re going to feed them to him as long as we can. He stopped eating every-damn-thing off the floor when we were giving him the crackers before, so maybe this will cut down on that again.

And even if quinoa is not safe for him, maybe he will have a slow enough reaction to it that it will buy us time until we can get the carpet and porch done, and maybe break him of the habit of eating things off the floor.

And even if quinoa is not safe for him, at least he would be reacting to something that is depositing some nutritional benefit into his body as it simultaneously hurts him, as opposed to plastic, which only hurts him.

And maybe we will get lucky (finally) and quinoa will be safe for him and he will stop eating crap off the floor, ooch his way slowly to baseline, and we can do a happy dance of celebration that we managed to survive 17 months with no safe foods for him.

Hey, I may have given up on the baseline/gut rest dream, but at heart, I’m still an optimist! It could happen!

(Probably won’t, but I’m gonna hang on to the hope…)

We’ll see how it goes. But we’ve got to do something. Sitting here spinning our wheels and not even getting baseline is frustrating in the extreme.

In other news, my parents came over to play cards with us on Saturday night. When it came time for dinner, I decided to throw caution to the wind and serve spaghetti…even though the last few times we had spaghetti – even my fructose-friendly spaghetti – it made Jed insane.

I had some of that last batch still frozen, and figured this would be a quick way to feed the herd and get rid of an “unsafe” food for Jed at the same time.

Lo and behold, Jed…was fine!

No attitude. No bad poops. No nothing.

Darrel pointed out that the last time we tried spaghetti on Jed, we’d been putting onion in nearly everything we cooked.

Now, we don’t. So maybe his little bucket is kept empty enough that he can now handle the occasional fructose serving without ill effects.

Maybe the onions were just enough to make it impossible for him to handle any extra fructose.

I think that sounds rational and true; or maybe I’m just clinging to whatever hope I can find, wherever I can find it.

Nah. I think Jed’s bucket is finally empty enough that we can occasionally fructose him and not make him sick.

Here’s hoping we can find some good news like this about Zac, soon.

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So, how was your weekend?