Would you like to take a trip into an FPIES parents brain for a bit? Good. Then let me share with you what Darrel and I have been thinking and doing the last few days.
We started Zac on sunflower products Thursday a week ago. We’ve been using Spectrum sunflower oil and homemade sunbutter for the trial.
Some corn allergic people have reported reactions to Spectrum sunflower oil, but it seemed to be the least reactive brand of oil out there, so we took the risk.
Honestly, at this point, we could care less whether sunbutter becomes a part of Zac’s diet. We really just want the oil.
With the oil, we can make a “formula-like” drink to help replace the breast milk he usually takes when I return to work in May.
So this is a really vital food trial for us.
Aside from some strange reactions that only seemed to occur when we heated any sunflower products, Zac was handling sunflower beautifully!
Then on Tuesday morning, the boys woke up before Darrel and me. Instead of waking us up, our sneaky little mischief makers decided to climb out of bed and go exploring – unsupervised.
Prior to this, Zac has never climbed out of bed on his own. Apparently, his big brother showed him how and helped him get down to play.
Sweet, but terrifying.
When Darrel and I woke up, we saw that Jed had helped himself to his sunbutter from the fridge and had eaten it straight from the jar. On his step-stool. Where Zac can reach. Oy.
Jed’s sunbutter carries a high probability of cross contamination from soy, and undoubtedly from corn as well.
Because you KNOW that if the sunbutter was down where he could reach it, and there were no parental figures saying “NO!” to him, that Zac ate some of that sunbutter.
Well, sure enough, by the next day diarrhea had started. Thursday he pooped all day long, and had a lovely, bleeding diaper rash to show for it. That finally cleared up completely on Sunday afternoon.
Here’s the thing, though. We aren’t positive he ate any of Jed’s sunbutter. It’s safe to assume he did, but we don’t know for a fact.
We also don’t know if he may be simply exhibiting a slow reaction to the minute amounts of whatever cross contamination is present in the Spectrum Sunflower oil…because we had noticed, over the course of the trial, that he didn’t seem to want to eat anything we simply drizzled oil over, but would eat the sunbutter. The sunbutter does have the oil added to it, but it is still mostly sunflower seeds.
So…no way to know exactly which one he is reacting to. Of course, it could easily be both!
Well, at that point we’d been trialing sunflower products for a full week, so we just pulled the sunflower trial for a break. Zac needed to get back to baseline before we could reintroduce it, anyway.
Only…my parents chickens will complete a full month on the expensive corn and soy free chicken feed as of Friday, the 14th of March. Chickens take about 30 days to create an egg from beginning to end, so that means that Friday we will have eggs that were made on just the “safe” diet.
Even with the Azure price on the feed, it’s still very expensive. So we need to get the egg trial underway as soon as possible. If eggs are not safe for Zac, that means we can stop buying the expensive feed sooner.
And we need him at full baseline before we begin that trial.
Besides, since we aren’t sure if he is having a problem with the sunflower oil itself, or a reaction to Jed’s sunbutter, or BOTH, we need to try and eliminate possibilities to narrow it down.
In my online searching for the best way to make homemade sunbutter, I encountered some instructions written in the early 1970’s on how to build your own sunflower seed oil press.
I’m not a fantastic builder, but from what I understand, it involves a car jack and some support beams and is probably about the size of an outdoor grill. Yay!
BUT…since we have oil seeds from my supplier, we can easily press our own oil for Zac if this doohickey works.
Fortunately, my Mom IS a fantastic builder, and she said she’s game to try and build us an oil press. (She actually made the stained glass sunflower in the photograph in this post! So talented!)
So we are shelving the sunflower product trial for now, so we can proceed with the egg trial and give my Mom time to build an oil press.
That way, when we do resume the sunflower trial, Zac will be LONG separated from any accidental “Jed’s sunbutter” exposure, and we will have NO cross-contamination in our oil. We will have a straight sunflower product trial, finally.
Then we can start the “If, Then” scenarios.
IF he does well with the home-pressed sunflower oil trial and we decide to call sunflower oil “safe”, THEN we can try giving him Spectrum brand again and see what happens.
IF he reacts to the Spectrum oil, THEN we know it has cross-contamination, and we will have no choice but to press our own oil for him forevermore.
IF he doesn’t react to the Spectrum oil, THEN we know that Jed’s sunbutter is not safe for Zac and will never trial it on him.
Isn’t FPIES FUN! (not)
The mental gymnastics behind deciding what to trial for FPIES, where to get it, and how to proceed are exhausting and overwhelming.
Oh, well. That’s our latest. I really, really hope that sunflower oil proves safe for Zac, regardless of how I have to procure it. He was gaining weight quite amazingly during the trial, but 3 days off the oil and he’d lost weight again.
He’s still heavier than he was before we started the trial, but I like seeing the scale go UP for him.
He needs the fats.
Later this week we will begin the egg trial, and I hope that goes well, too. Eggs may or may not be the best food out there to eat (read the comments on this post), but it’s a food I can control the production and source of and therefore make corn-safe for my son. That’s too hard to find to shy away from any food.
Besides, it will make going back to work SO much easier for me. I can take hard-boiled eggs for breakfast!
So, how was your weekend? What fun mental gymnastics have you had to do thanks to FPIES?