It's probably time to give another health update, as things have literally been changing by the day and sometimes by the hour...
In an earlier post, I (Amy) explained a little bit about the medication that we had to start following the antibiotic to help restore the good bacteria in the gut & fight the bad stuff. And as I said, it was hard to watch this medicine go to work because things got initially REALLY BAD, and that was supposed to be a good thing. Here's an example of what happened that first week to "show" the doctors it was working...
These skin rashes that crawl all the way up her legs (which have been around for awhile & are related to all of this gut stuff- sometimes they've been inflamed, and sometimes not...) became VERY inflamed initially with the medication. It looked awful, but thankfully they didn't seem to bother her that much.
The poop (which to us is the main indicator of her gut health) had STILL not gotten back to the great ones we had been having when we started zinc initially. Let's just say they were extremely inconsistent looking, would have undigested food in it, & were pretty gross & mushy. (not watery) We have been discouraged for the past month about why things weren't getting better.
Then, just this past week, to our surprise Marc & I noticed the skin on her legs had changed again to this...
loss of pigmentation (white spots & patches) on her legs & arms. It scared us. So after a trip to the doctor and a BUNCH of research and retracing all of our steps over the past month, we had to go back to what we KNOW is going on. And that is that something (whether it's celiac or something else) has caused a severe zinc deficiency in my child. A nutritional deficiency (particularly zinc) is very common with intestinal/malabsorption problems, but our case is probably more severe than most! Signs of a zinc deficiency? Hairloss (including eyelashes & eyebrows, which have now grown back!), skin lesions including pigmentation issues, & diarrhea are among the top symptoms...
So we were still giving her the same amount of zinc as we were when we were seeing good consistent progress in her poop, so why wasn't it good again?? That got me researching what the best ways of absorbing zinc were. (because I knew she was GETTING it-- I'm still seeing little white fuzz come back on her face/side burns & arms-- but for some reason I don't think enough of it was actually absorbing...) And wouldn't you know that the 2nd bottle of zinc that we had started (right around the same time as the medication) was a different FORM of zinc, one that is apparently not as easy for the body to absorb!!!
Don't you know that got us running to the health food store as fast as we could the next day to try out our new theory!!! We upped the dosage from before just a bit, too. (with our doctor's permission) And sure enough-- the first poop afterwards was near perfect. Night and day difference. The next two (sparing you the details) were obvious to us that the medication was doing its job, and just today, another perfect one again. The past two days her complexion has come back beautifully, too!!!!! (making the white places on her leg not look quite as noticeable, but our doctor said that it may take 6-12 months for the cells in the skin to replace that depigmentation once it's been killed... ugh. Of course, who knows what's in store for us...)
It's still probably too soon to "call," (especially on THIS roller coaster ride) but good GRIEF! Who KNEW that just changing the FORM of zinc would make THAT much difference!?! Really?!? Apparently, the FORM of zinc matters!!! (kindof aggravating when I think of how far down the road we potentially might have been if we hadn't gone with the cheaper bottle at the vitamin shop closer to our house, because of course they didn't even CARRY the better form of zinc...you have to drive across town to find that...)
But we're seeing good things again! Thank you for praying for us. Pray this will continue.
We've scheduled an appt with a pediatric gastroenterologist at Duke University in a couple of weeks. While we feel good about the local care we've been receiving, we certainly don't mind getting a 2nd opinion from a top-rated hospital. I am praying that they may help us put some of the pieces of this puzzle together for us, perhaps do some more extensive bloodwork than we have gotten thus far, and give us some more concrete answers. (for example: we know alot of this is related to a zinc deficiency, but what exactly caused the zinc deficiency in the first place?)
It's funny (and a little sad to me, too) to hear Caroline verbalize some of her daily schedule surrounding her health:
"I need a little vitamin [i.e. digestive enzyme] and a big vitamin. [i.e. multivitamin]"
"Mama, is that my probiotic?" (ha ha-- what kid says THAT?!)
"I'll take my medicine." (as she sticks the oral syringe into her mouth & pushes on the end to take it all by herself)
"Zinc makes me stronger!"
Yep, apparently the form of zinc matters.
And this gal doesn't mind one BIT. :)
p.s. and of course not 5 minutes after I published this post, we had another not-so-good poop. :( Figures...