I know you’re all on pins and needles, anxiously awaiting news of how the sunbutter trial is going for Zac. (Right?)
Well, so far, so good.
Sort of.
With caveats.
Ready for a story?
About a month ago, a lovely young lady from our church began advertising for a fund-raiser. She’s a beauty pageant contestant, and is raising money for her travel and other expenses.
Her idea was very fun: a night of desserts, dancing and dress-up for couples!
She contacted Darrel to see if he would be willing to be the official photographer for the event. Of course he said yes, and they decided to set up a photo station reminiscent of Prom photos.
After all, it’s not often couples get all dressed up for date night and have a professional photographer there!
The event was last Saturday night, and Darrel and I were very excited about it!
Anticipating a large turn out, we expected Darrel would need an assistant to help process sales and do the non-photographic legwork of the whole thing.
So the plan was for my Mom to come to the event with us, keep the boys in an unused Sunday School room so I could pop over for nursing when necessary, and when bedtime came, get Zac one last good nursing, change the boys into pj’s, and drive them home. By the time they got home they’d be sound asleep and Mom could easily get them in to bed by herself.
Meanwhile, Darrel and I would be making money for ourselves and for this lovely young lady from church, and possibly get to steal away for a dance or two…you know, almost like a normal couple on a date!
What does this have to do with sunflower and Zac?
Well, if you remember, on Thursday we fried up some quinoa nuggets in sunflower seed oil. I told you about that: poop explosions and hiccups, but the next day he was fine.
Friday he only got raw, uncooked sunflower products: some oil and some sunbutter. He was great all day! No signs of a reaction whatsoever!
Saturday, Jed requested cookies, so Darrel made him some sunbutter banana cookies.
Halfway through the process I realized – hey! Zac could have something like this!
So I mixed up some quinoa purée and sunbutter and made him some sunbutter-quinoa nuggets.
He ate about 10 of those at 4 p.m., and seemed to like them.
Meanwhile, Darrel and I were getting dolled up, and he headed off to make sure things were set up properly and to be available for any “early birds”.
Mom got to our house, we got the boys dressed and packed, I nursed Zac one more time, and we followed Darrel to the church. I mentally noted that Zac had hiccups at some point during this time.
And here is where the evening began to go wonky. When we got to church, I looked back to see that both boys were already sound asleep in their car seats.
It was only about an hour before normal bedtime, and none of us had slept well the night before. Mom and I decided to just let her go on home with the boys and put them to bed a little early.
So I went in to work and party, more dressed up than I’ve been in years, and Mom went home with the kiddos. The turnout was NOT as large as anticipated; thanks to a weather forecast that predicted ice and snow much later that night, apparently a lot of people decided to skip the event.
An hour after I walked in the door, the texts started.
“Zac has been screaming non-stop since I took him out of the car seat. He refused the bottle I made for him. He won’t let me touch him. What should I do?”
When we got on the phone, I could hardly hear Mom over the screaming in the background!
I decided I would just go home. After all, with such a low turnout, Darrel was handling the business end of things just fine on his own.
An hour and a half after Mom and the boys had arrived home, I walked in the door.
Zac was screaming. Barely any tears, no snot from his nose, hiding in the corner, and he didn’t stop screaming when I picked him up. The volume lowered a bit but he didn’t stop.
When I went to change his diaper, he began screaming bloody murder! Fortunately he stopped screaming like that when I picked him up again.
That’s when I noticed he didn’t have his amber necklace on. Apparently, in the rush to get ready, I had forgotten to put it back on him after his bath.
When we went to the bedroom, I grabbed the necklace, put it on him, and immediately laid down to nurse him.
It didn’t create instant “happy Zac”. He was restless, squirming, and making moaning noises for the first 15-20 minutes I nursed.
Finally, he calmed down. Eventually, he slept.
And by that point, it was 9:00 p.m.
The event ended at 10:00 p.m.
Not really worth driving back for at that point.
I “de-briefed” with Mom about everything that happened (it would have been easy to miss when we were discussing things with a screaming Zac in the background) and originally, she was concerned that this was Zac throwing a fit because he wanted me.
I know that didn’t explain it, though. When he pitches a fit because he wants Mommy, he cries. There are tears, snot runs out his nose, and he will go to trusted family in hopes they’ll take him to Mommy.
Screaming with little tears and no snot, refusing to go to Grandma…that’s not pitching a fit. That’s a reaction of some sort.
Dang it!
When the time came, Mom picked Darrel up from church, leaving me at home in case Zac woke up.
Right about that time, a fellow FPIES friend sent me a message, and in describing the evening to her I made a connection: Zac has been fine on sunflower products overall…but he has had somewhat disturbing symptoms every time he’s been served sunflower products that have been HEATED in some way.
The sunflower oil on Thursday was heated for frying, and the nuggets Saturday night were baked. After both of those, he had hiccups and weird poops, and after the larger quantity of sunbutter in the nuggets he screamed and seemed in pain.
Why on earth would that be?
Fortunately, my friend who messaged me has recently delved into the world of genetics, and she informed me that sunflower oil (and therefore sunbutter, since it has the oil in it) is extremely unstable when heated and oxidizes at low temperatures.
Oxidation makes the oil rancid.
Some genetic mutations make people extremely sensitive to oxidized foods.
In other words, I wasn’t hallucinating: it is possible that Zac is fine (for FPIES) with raw sunbutter products but simply cannot handle them (for a non-FPIES reason) when heated.
(This would explain why my photograph of our sunbutter is very pale in color; aside from the 3 minute roasting that is necessary to remove the shells, I won’t heat the seeds any more. So my sunbutter doesn’t get that lovely golden color to it that roasted seeds produce.)
So far, Zac is doing incredibly well on the sunbutter! He weighed in yesterday morning at 24.2 pounds – a new record! He’s got so much energy he doesn’t know what to do with it, and can almost say “Ball” completely clearly.
But if we feed him sunflower products that are heated, watch out!
It looks as if we need to dive into the world of genetics now.
I’m not looking forward to that.
In the end, Saturday night yielded us one very short, interrupted date, one 30 second dance with my husband, some photography business – but not as much as anticipated, and the discovery that we need to test Zac’s genetics for potential mutations. (Which we already suspected, but now are sure of.)
But I did get one good photograph of Darrel and me together post-weight loss.
So, that’s something good, right?
Still, I think we’re done trying to have dates for a while.
Anyone else done genetic testing? Any advice, tips, or words of wisdom you can offer?
(And yes, the title of this post implies that Zac had an FPIES reaction, when I suspect he reacted for a different reason. I didn’t know what else to say…”Date=0, Business=0, Strange Reaction Due to Some As-Yet-Unknown Possible Genetic Mutation in his Methylation Pathways=1″?? That’s a bit wordy! I hope you’ll understand the imprecision on the title!)
