Zac’s Probiotic Trial: Update

So many people have asked: How is Zac’s probiotic trial going?  Well, honestly?

I don’t know.

After Friday morning’s post, he had a diaper with blood.  He had another one later in the day.  But…it was trace blood that only showed through testing, and in the first diaper I found one of those pear tree buds he had been reacting to.

So was it the tree bud, or the probiotic?

I hung out hope it was the tree bud.  

He also couldn’t/wouldn’t nap that day, until I finally laid down with him and napped by his side.  THAT is highly unusual.

At dinner, I suddenly realized I had forgotten to put his Baltic Amber necklace back on him after his bath the previous night, and that could have contributed to the poor napping.  We put it on him right away, and that night he went to sleep easily and slept better than he normally does!

Still, that was two days of probiotics at 1/4 dose, and after talking it over with my brilliant FPIES Mama’s, we decided it was best to drop the dose some more.  So that night, we gave him 1/8th of a dose.

And Saturday was a GREAT DAY!!

He was fine all day!  He didn’t take a great afternoon nap, but he took a normal morning nap and slept well that night.  All day was a pleasant day for him – and he had NO poopy diapers!  That’s a good sign!

Sunday was much the same.  He took great naps all day, no poopy diapers, BUT…I noticed that his face is breaking out in some eczema.

So…we’re having some mixed signals here, and I don’t know whether this is working or not for him.

Most concerning is that I JUST learned that the probiotics we are using are, as stated, corn-free…HOWEVER!  They “feed” their cultures dextrose to grow them; corn-derived dextrose.  

This “shouldn’t” be a problem.  The proteins in the dextrose “should” be broken down enough to not be a concern.  There is no corn IN the probiotics…but it IS what they ate when they were growing, so…

While it “shouldn’t” be a problem, I’m concerned that it might actually be a BIG problem.  

I have a call in to the company to ask them more questions, so we’ll see what they say. (If this is a problem, I’d really like a refund!)

We’ll continue to watch him, and if he has a poopy diaper that tests negative for blood, we’ll up the probiotic back to 1/4th dose to see how he does.

Of course, we may wind up having to shelve the whole thing and switch probiotics, or perhaps start a bone broth GAPS trial instead in order to heal his guts.

I really hate what FPIES is doing to my son and my family.  I really hate the uncertainty of every thing we do.

Sigh…well, I haven’t given up, yet!  He may be just fine on this probiotic (even if it did eat corn to grow into big, strong little probiotics)!

Fingers crossed and lots of prayers, please!  Zac sure could use them!!