Little Boy Blues

It’s been a while since I really just wrote about what is happening with the boys, so here’s the latest:

Jed is doing well on our Fructose Malabsorption diet, and we’re trialing him on different foods to see how he handles them.  So far, we’ve tried coconut shreds, coconut milk, garlic, onion, and, accidentally, zucchini!

Chocolate Pudding Face!

Garlic gave us clear cut symptoms almost immediately and was clearly a fail.  However, I was using garlic powder for the trial (as that was all I had in the house!) so I do wonder if just a clove or two of garlic in a dish for flavoring would be a problem.  I may decide to give that a trial at some point.

Coconut shreds also gave us some clear symptoms, but I just couldn’t let it go.  We can avoid coconut shreds pretty easily, but coconut milk is a godsend to a dairy-free kitchen, and I HAD to know if it was going to be a problem or not.  Thank goodness I pushed through!  Turns out, real coconut milk (in the can, not the boxed drink) poses NO problem whatsoever for Jed – so we can bring whipped cream, my hot chocolate recipe, coconut milk ice cream and all sorts of other yummies back into rotation.  Happy dance!

Onion concerned me; it has fructans just like garlic, so I was pretty sure it would be no good.  Still, I had to try because it certainly makes food taste better!  So I added half an onion chopped up to a few dishes and gave them a try.  Turns out that onion is okay!

The only time we had any confusing signs was the very last day we were trialing onion, when we saw some undigested food in his diaper.  But, it was bell pepper skins and what looked like the seeds from a zucchini.  Bell pepper skins are a tad tough to digest, so I rank them up there with corn (you know you Mama’s have seen whole corn kernels in diapers before!) and don’t worry too much about it.

I was updating our diet book with our “go” and “no-go” foods for Jed, when I saw that zucchini is actually on the “avoid” list for fructose!  My brain switched that around completely somehow, so I didn’t realize that I had actually given him two trials at once the night before the concerning diaper: onion AND zucchini!

So, I’ll keep giving him onion, but keep an eye on it, and we’ll give a separate trial for zucchini just to see.  I honestly think the onion is going to be fine as an addition to a whole dish for flavoring purposes, but that onion rings or my 4 onion soup (it’s heavenly!) are probably not going to pass muster for his little tummy.  Just Mommy Gut chiming in on that one.

Next, I really want to try him on wheat.  My homemade honey wheat bread is one of our favorite foods in this house, and I’m pretty sure I can make it with maple syrup instead of honey for the purposes of testing wheat.  That way, even if it’s a no-go food for Jed, he’ll have been able to enjoy having a slice of toast and a sandwich for a day or two before we have to pull it back out of his diet.  (Though, does he really enjoy eating the foods that wind up causing him problems?)

We’ve pulled peanut butter out of his diet, too.  He definitely had a reaction at one point, and we were confused at that time about whether it was peanut butter or cross-contamination of the rye bread we were giving him.  Thinking through it in hindsight, though, it was not the first time he had been given that rye bread so the idea of it being cross-contamination (with egg or dairy, for example) doesn’t hold much weight.

At the same time, he’d had peanut butter many, many times before, too, and hadn’t had reactions.  Then our new allergist (love that man!) pointed out that sometimes peanut can cross-react with certain pollens, so voila!  Our answer: Jed can handle peanut butter…unless there is something going on pollen related in our area, and then it breaks him out in hives, rashes, and makes him want to put Neosporin on his tongue.

Frankly, sunbutter makes him just as happy and doesn’t leave me debating on dipenhydramine or Epi-pen, Jr. use, so, see ya, Peanuts!  I’d just as soon not take risks with peanuts!

One thing that hasn’t really improved is weight.  As of yesterday, he weighed a whopping 26.2 pounds.  He’s been steadily holding on to the 26-27 pound range since January, and we just can’t seem to get him to gain weight.  Even when he eats well.  Very frustrating.

So that’s where we are at with Jed.

Zac, on the other hand, isn’t doing so well.  Between ibuprofen, acetaminophen, board books, examining room table paper, stray sausage crumbs, stickers off sunglasses at the dentists office, kitty litter, cheerios, non-toxic soy paint and a crumb he got on Feb. 25th that I didn’t even write about he’s been almost constantly reacting since the beginning of November!  

Me and Zac in a Box. That’s entirely too appropriately metaphorical for my tastes, actually.

Three days ago I thought we were finally, FINALLY on the upswing towards getting to baseline and then BAM!  Two days ago it started: mucous filled diapers with a nasty smell and trace blood in testing, frequent sleep disturbances and comfort nursing.

Sigh…

The worst part is that this time I don’t even have a CLUE what could be causing it!  He’s no longer allowed on the floor in the kitchen or dining room and there is no food allowed in the living room.  We still sweep the floors multiple times a day.  And in his diapers I have found WHOLE carpet fibers (really, Zac?), a freaking FEATHER (from WHAT??), and some unidentifiable “somethings” that LOOK like they might be food, but really, I honestly don’t know.

Not to mention the leaves and twigs I’ve found that I can only guess he found on the carpet after being tracked in by me or Darrel.  (Whatever genius decided that houses don’t need an entryway but instead should have the front door open directly into the living room needs to be slapped. Just sayin’.)

Do leaves and twigs have proteins in them that can set off FPIES reactions?  I don’t know!

What about the wool in the carpet fibers?  Or how about the feather from whatever unidentified fowl that he ate?  I don’t know!

Folks, I’m about at my wits end, here.  I don’t know what else we can do to get him to baseline.  But here are my thoughts:

• Start using separate scrub brushes for cleaning my cookware, plates, and utensils from the “regular” meals I make.  (Hasn’t been a problem, but just in case.)
• Shoes come off before we walk on the carpet.  (This is going to be tough.)
• In addition to sweeping, we will now vaccuum the carpets at least twice daily.

And if all else fails?  His cute little tushie is just going to have to move in to the pack ‘n play.  I know he wants to cruise and attempt walking (he’ll stand all by himself and even take single steps in the last week!) but even if it delays his walking skills we have GOT to get this kid healthy!  I’m sure I will be greeted with hours of wailing and screaming about this, but I have flat run out of ideas.

Sigh…I really want to stop seeing diapers that make my stomach drop.

And I really want to feed my son.  Really.

So, that’s where we’re at.  Would you mind praying for us, and maybe offering any suggestions that would work to keep a curious crawler from putting every single thing he finds into his cute little mouth?  Thanks!