Sorry this is so late today; I didn’t get a chance to use the computer all weekend and today was wicked busy!
SO…as I left it last week we were wondering about the corn in the probiotics and weren’t sure if Zac was handling them well or not.
Monday I spoke with the lady at the probiotic company while Jed single-handedly attempted to destroy Hobby Lobby, and Zac ate the paper off a package of craft pipe cleaners I was getting for Jed. Remember?
Well, in all the aftermath of that, I never revealed what I learned!
Turns out, GutPro is 8 different strains of probiotics, and ONE of those strains is SOMETIMES fed a dextrose solution when it is being grown. After all the strains are grown and bottled, each batch is tested for the presence of any allergens – including corn. They will not ship any batches that test positive, and according to the rep I spoke with, their batches never test positive.
In fact, the rep I spoke with was herself an FPIES Mom! Her two daughters had/have FPIES, so she completely understood my concerns and was very helpful in discussing the trial for Zac.
I had to say this was about as good a guarantee as you’ll ever get (when dextrose is involved), so we decided to continue the trials.
Especially since Zac had eaten paper! We figured the probiotics might help him get through the reaction better.
We were right; not only did he eat that paper on Monday, but on Tuesday the little stinker managed to find more paper to eat – twice! The first was a piece of a board book that Jed had ripped to shreds and somehow tracked into the living room; the second was the business card of the house inspector who came and looked at our house on Tuesday that must have fallen out of my pocket. Ugh!
So we just let our guts clench up and waited to deal with the vomiting…except, it never came.
The worst we got was microscopic blood in his stool for four days, muscousy, smelly stool for five days, a little eczema on his face and some sleep disturbances.
Compared to December’s paper eating debacle, this was almost a NON-reaction!
We kept him at 1/8th of a dose through the whole week, hoping, praying, and crossing all our fingers and toes.
Saturday, we had a very exciting day: ZAC HAD A NORMAL POOP!!!!!!!!!!!!!!!!!
It’s the first one he’s had since OCTOBER!
It actually took me and Darrel several minutes of staring and smelling the diaper in confusion before Darrel said “I’m not sure I remember, but…is this what normal 10 month old poops are supposed to be like?” before we realized we were staring at a miracle!
In celebration, we gave Zac extra probiotics! Back up to 1/4 dose!
He got 1/4 dose on Saturday and Sunday, and though he and Jed both came down with little colds this weekend, he seemed to be doing just fine otherwise.
Then today he had another of those WOW mucousy diapers that he had 24 hours after his very first dose nearly two weeks ago; again, it tested negative for blood.
But this time, it took him 48 hours before he had a questionable diaper!
He did have a much smaller version of the same thing a few hours later, but really, he has some slight eczema on his face (which honestly could be leftover from his paper eating extravaganza), and a runny nose (from his cold) and has been having a rough time sleeping the last two nights (again, from the cold) but otherwise is just fine.
Still, Darrel and I decided to drop his dose…a bit. Instead of going back to 1/8th, we gave him 1/6th of a dose tonight.
The GutPro rep did suggest going v e r y slowly with the probiotics, and the FPIES Mama’s said the same thing. Maybe 1/4 dose jumps are too much, too quick. So, split the difference, and let’s see if his body can handle that better!
I’m shooting off an email to our doctors in Georgia tonight, filling them in on our Great Probiotic Trial and asking their advice on one salient point: at which point during this trial do we go ahead and push on to solid foods? When he’s reached a full dose? Or at some smaller dose…say, 1/2 a dose?
‘Cause I’m, like, 6 weeks away from heading back to work, and we’re, like, running out of time here. (Like, totally!)
(Sorry, my inner Valley Girl sometimes comes out when I get smart alecky.)
So, that’s where we’re at. He’s doing great, and I’m happy dancing my way around the house at this fabulous turn of events for my son.
Oh, and not to leave Jed out: he rocked speech therapy today! Met all of his milestones and has received NEW milestones to shoot for! He’s singing, mimicking, naming objects, and even ASKED QUESTIONS! (Which his therapist told me is VERY advanced for his age; to be asking “How?” “Why?” and answering the question of “Where is it?” makes Jed brilliant!) (OK, so ‘brilliant’ is my adjective. His therapist was much more clinical and restrained. But, it’s my blog! So he’s brilliant!)
Ah…I’m going to revel, wallow, and soak up this happy day where so much is going well for the Summers’ boys…after all, we’ve had a rough 5 months.
Well, a rough 8 months, if you want to get specific.
So, happy dance for us, y’all! The boys are coming up from behind!
Yay!!! Hapoy Dance!
That’s really good news!! Also I’m so glad you got to speak to an FPIES mum at the probiotics place – I bet that’s the only thing that would have totally 100% reassured you that she completely “got it” about how important that was… I know I’m like that on the rare occasions I stumble over somebody else with my diseases and the feeling of relief that you know they really “get it” is immense!!
There are no words to describe how AWESOME it is when I find someone who “gets it” right out of the starting gate! I think you have to live it before you can truly appreciate it. Glad you’ve found people who “get it” – it has surely seemed like you’ve been battling a long time alone. 🙂
Yee haw!!! Congrats to both boys. God is so good.
Yes, He is!!
Woo hoo!
Wow, great news Carrie.
Thanks, Bryon!
I’m guessing Zac is done with FPIES. I was wondering if you’d recommend gut pro?