Last week I went to the doctor. For me, not the kids.
I’ve been having some strange symptoms the last 6 weeks or so. A strange “lightening” in my chest followed by the feeling that I’m suddenly standing on a mountain peak, having a hard time breathing the thin air. Woozy spells where my head feels like it’s floating.
It’s all very non-specific, but considering some family medical issues – and the fact that at 35, I’m no longer a spring chicken – I figured it was smart to get checked out.
Our GP, who I adore, said it sounded like one of two things: a heart problem of some sort, or anxiety attacks.
She gave me an EKG, which showed up perfect, of course. It’s just a snapshot in time, after all, and I wasn’t having any symptoms on that day. She took blood work, which so far has come back completely normal (no anemia or B12 problems at all, even on this TED – this was surprising!). The next step to rule out a heart problem is to wear what is basically a portable EKG for 48 hours and keep a record of every time I have an “episode” so they can rule out or confirm a heart problem.
I no longer think there is any need to wear the heart monitor. I’m convinced I’ve been having anxiety attacks.
Is it any wonder? I feel as if I’m being pulled in a million directions all at once! This month I return to work. My parents are moving. My baby has been reacting strangely to probiotics and I can’t find any answers. Finances are terrible. Anxiety seems just about right for my situation!
But the thing that proved to me I am not suffering from some strange heart condition happened last night. Darrel and I decided – at the last minute – to trial Zac on quinoa.
We took him off the probiotic last Monday, and after three days without it he suddenly began sleeping for 3-5 hour stretches all night long. Ever since April, he’s been waking up about every 1.5-2 hours to nurse all night long. That is a HUGE difference!
Plus, he hasn’t had any poops for 5 days. Back before all this started, that was just about normal for him.
So we are left to conclude that while the probiotics seem to be helping him, they’re also causing a low, minor reaction of some sort. Which means the probiotics are a no-go.
Crap.
So as Darrel and I sat discussing our next plan of action, it seemed clear the only choices were to trial a broth (a la GAPS), trial a new probiotic, or trial a food. Darrel was adamant that we needed to start a food. Zac is 1 year old now and still can’t eat anything, after all!
So I said “When? Tonight?” as a joke…but Darrel said “Why not?” And, after I picked my jaw up off the floor I had to acknowledge that, well, he has a point. You start food trials on kids when they’re healthy, not reacting, and doing well. Right at this moment, he’s healthy, not reacting, and doing well.
Um…okay! Sure! So into the kitchen I went, cooked up some quinoa flakes, and the food trial began.
From the minute we decided to do it, I started feeling a lightening in my chest. By the time I was feeding him with the spoon, it was getting hard to breathe. Ten minutes into feeding him, I had to sit down because I was getting so woozy.
And those symptoms didn’t let up for HOURS after the feed finished! Oh, and about an hour after we fed him, my stomach started cramping, too.
Food trials are really, really hard on me!
But, at least it makes it clear: this was a straight up panic attack that lasted for hours. So, no need to wear a portable EKG now!
Silver lining, here, y’all.
As for Zac, well…I have pictures to show how he handled his First Ever Food!
Zac got to sit in the high chair – with a BIB! He was very excited by this development…
But then he got a little nervous…
And then we started feeding him…
But eventually he got the hang of it! Getting out the high chair tray and putting the quinoa on it so he could play with it and feed himself helped a LOT!
After we fed him, it was shower time and bedtime. I nursed him to sleep, as usual, and then we waited.
While most “classic” FPIES kids react at 2-4 hours after ingestion, Zac has always been a bit more delayed. His reactions can take from 4-16 hours after an ingestion before the vomiting and diarhhea begin. So we waited to see…
And he slept for FOUR HOURS and 45 MINUTES before he woke up to nurse the first time! Wahoo!
This morning he woke me up with a smile and a grin, and so far sees to be just fine.
Whew!
So we’ll feed him some more tonight, and if that goes well, then tomorrow he can eat as much quinoa as he would like!
I’m feeling much better this morning, too. Keep praying that this works – we won’t really know if quinoa is a safe food for at least a month, but so far it seems as though we’ve made it past the possibility of an acute reaction and that is a big enough milestone to pass for now!
I am nauseous and nervous, but I am SO HAPPY I CAN FINALLY FEED ZAC!!! Celebration!!
Anyone else get physically sick when you fed your child for the first time? Tell us how it went, please!
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Follow-up:
I don’t have the heart to re-write this whole post. It was ready to go this morning, except for the video I’d planned to include. Our internet connection is very slow today, so it is taking an exceptionally long time for the video to upload to YouTube. So I waited to post this.
I waited so long, in fact, that we now know that quinoa is not a safe food for Zac. He had three diarrhea diapers this morning, and the third was full of visible, bright shiny red mucousy blood.
Darrel and I both feel sick to our stomachs, but Zac is just fine – except for the bloody poop. I’m heartbroken.
I have only just recently joined your blog and I am not very familiar with FPIES, but I wondered if the fact that quinoa is a grain may have caused the reaction in your son? Perhaps a white potato might be a better choice? Wishing you all the best!
Hi Suzanne! Good question…actually a lot of FPIES doctors seem to recommend not doing a grain as a first food. We picked quinoa with our dieticians help because it is such a “powerhouse” food. If he succeeds with quinoa he will get GREAT benefits from the complete amino acid composition of quinoa, high protein and fiber, not to mention lots of kitchen options.
If it turns out that quinoa is unsuccessful, we’re planning to move on to a meat broth.
White potato might be a good food, but I can’t afford to lose it from my diet right now so we can’t trial it on him yet. Thanks for the well wishes! I am overwhelmed with the outpouring of support we received! Hugs!
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