Last Thursday evening, Darrel and I decided to begin our next formula trial. We’d decided to go ahead and do a gradual trial before I returned to my last two weeks at work before the leave of absence, and Zac was at baseline on Wednesday. So, Thursday evening we gave him a sippy cup of Splash.
You’re confused, right? Last time I wrote about our plan, I said we were going to trial Neocate Junior. So what’s the deal with Splash?
I didn’t get a chance to mention the change in plans, but after we’d discussed Neocate Junior for a bit, the other FPIES Mama’s chimed in with suggestions. They mentioned that Nutricia also made a product called Splash that resembles a juice box drink; it also has corn, but in the form of maltodextrin instead of corn syrup solids.
Since I was having gut cramps at the idea of trialing Neocate Junior due to Zac’s reactions to it’s Infant product last year, I immediately got excited. When Darrel got excited, too, well, we knew we had to go with the Splash.
I had a gut feeling Neocate Junior would end up in a reaction, but I had a really hopeful, optimistic attitude about the Splash. For the first time, I had real hope that we would finally find a safe formula for him.
So, Thursday night and the sippy cup. We poured the whole box in with the goal of letting him drink as much of it as he wanted. He drank about an ounce and a half before he put the cup down and didn’t want more, and we called that good enough for a first night.
He seemed to like it, and acted normally for the rest of the evening.
At bedtime, it all started to go downhill.
Now, over the last week Zac has been behaving differently at bedtime. Instead of nursing and falling asleep right away, he’ll nurse for a minute, pop off, crawl away crying, and then when he hears the nursing bra snap open for the other side he turns around, smiles, and crawls back.
That’s teething; it hurts to nurse, so he doesn’t nurse for long and pops off, but he’s still hungry so he keeps coming back for more.
Well, he did that Thursday night, except after crawling away crying, he would turn around and scream at me in pain, arch his back with force, throw himself around on the bed, fight being brought back to me, and generally was acting as if he was in more pain than he knew what to do with.
The only way I could get him to nurse was to sit bolt upright with him sitting on my lap, facing me. After about 5 minutes of that, he was finally tired enough to be laid down and fall asleep.
He then proceeded to wake up EIGHT TIMES throughout the night, and each time was a repeat performance of the shenanigans at bedtime. Then he woke up for the day at 6:45 a.m. – much earlier than his usual wake up time.
Still, in the morning, he acted perfectly normal! Happy, smiling, easy-going Zac. So I started to think it was just a combination of teething and the sometimes rough transition to elemental formulas, and that we were still in the land of “This could be okay!”
Then he had a poopy diaper. It wasn’t bad, actually; a fair amount of mucous, but otherwise typical of an elemental formula diaper. I tested it for blood and it was negative.
A couple hours later, another poopy diaper. It was exactly like the first one, so we gave him a sippy cup with Splash (grape flavored, by the way) and he chugged down 6 full ounces!
I. Was. THRILLED! It really seemed like this trial was going well.
And then…the third poopy diaper.
Mind you, this is a child who, at baseline, will poop once every 3-6 days. So 3 poopy diapers in one day is not normal for his body. We decided it was because of the formula; new foods mean new poops, right?
But with the third poopy diaper, he screamed as soon as he pooped. He fought me on the changing table, and he whimpered and cried when I wiped him. He also had the “red ring of doom”, aka an “allergy ring” around his anus. (This is a common reaction symptom; the skin around the anus turns bright red in a circle shape.)
So I tested this diaper for blood, and it came back positive.
(That’s the sound of the world when it stops turning for a moment.)
Neocate Splash is unsafe for Zac.
At this point, our hope is that he will return to baseline by the end of this week so we can trial another formula on him. I have to fly back to work (at a new base, with a new supervisor who does not know me – ack!) next Thursday, work Friday through Monday and return home Tuesday. Then I’m scheduled to fly back the following Saturday for 6 days of work that begin on Sunday.
I have a horrible feeling I won’t be working those days.
Our tentative plan is to feed Zac the remaining breast milk until we run out, maybe leaving enough for a couple bottles still in the freezer, and start the formula trial on Friday or – hopefully – Saturday next week.
While I’m gone.
In another state.
And will need HOURS to get home if I’m needed.
I think I’m going to vomit.
If he reacts to THAT formula, then we’ll have to get him to baseline and repeat the process for the following week I go to work. Or come up with a new plan.
Either way, Darrel and I have decided: we’ll be trying two new formulas, and if those don’t work, we’re giving up the formula search. We will trial the ingredients necessary to make a homemade hemp milk formula that is macro-nutritionally complete but not micro-nutritionally complete, just to have SOMETHING to give him on occasion, but we will progress to food trials beyond that.
And come February when I need to return to work again? If he doesn’t have enough safe foods to survive without primarily nursing (which is likely, given his track record), I will have to take some kind of extended leaves of absence from work and our finances really will bottom out.
I know I’ve mentioned financial strain in our world before, but we’ve been able to hang on to the edge of the financial cliff of doom with our fingertips by shuffling money, scraping by, compromising and making odd choices. This 5 month leave I’m facing is going to put us in a position that will, hands down, be the worst financial situation I’ve been in my entire adult life. That’s counting my first year as a Flight Attendant, when my take home pay per month was $963!
So if I can’t go back to work in February, and something major and miraculous hasn’t happened to change our situation before then, well…we’re screwed. Royally. Completely and totally.
Oh, and not to put all the focus on Zac, here, but Jed also had a food reaction Friday night!
With our financial situation looming, I’m trying to find as many ways to “eat cheaply” as I can, as our grocery budget is one area where I could, theoretically, cut some more corners. (Eating allergy free is VERY expensive!)
So I made a big ol’ pot of pinto beans to trial. Pinto beans – most beans, actually – are on the “probably not gonna work” list for Fructose Malabsorption. But Jed has surprised us with some of the things he can tolerate, and before all this started, pinto beans and cornbread was one of his favorite meals!
So he ate a couple small bowls of pinto beans for dinner, and within two hours my sweet little boy had turned into devil child. Belligerent, argumentative, uncooperative, tantrum-throwing, fit-pitching hyperactive little hellion!
Well, there goes my idea of $1 to feed Jed and Darrel for about 4 meals.
Do you know what Jed LOVES to eat and will eat with NO hesitation or physical challenges? Freaking SALMON, CRAB, and SHRIMP! Only the most expensive stinking things in the whole grocery store!
But his little body can’t handle pinto beans at $1 for a pound.
And that’s just the way it goes for us. (Please join me in rolling my eyes, shaking my head, and sighing right now. Thanks; misery loves company!)
I’m not nearly as depressed by this development as I was by the lamb/quinoa reaction two weeks ago. I don’t know why, but I’m much more ‘sigh, matter of fact, stoic’ about this one.
Still, it’s a rough blow for our family – both reactions, actually – and things are just not good right now.
So, I need some cheering up! Tell me something good that’s happened in your life lately! Share a joke! (Seriously, y’all, I need something to laugh at and be happy about, so help a Mama out!)