Rocephin Reaction

photo courtesy of Rasmus Thomsen at http://freedigitalphotos.net
We don’t quite know which direction to steer next.

Before my impromptu craft fair hiatus, I left our regularly scheduled posting with a cliff-hanger: Zac had an ear infection last week that required another round of Rocephin shots.

Obviously, this is not great news; at the same time, though, I admit to being a little excited. After our last round of Rocephin shots it seemed like Zac’s tummy got all straightened up and he enjoyed baseline for a while.

If he truly does suffer from gut dysbiosis, that makes some sense. All the bad bacteria were killed off, making him a tad healthier for a while.

I hoped the same thing would happen this time.

It didn’t.

Instead, he proved that Rocephin ranks up there with acetaminophen and ibuprofen on medications that make him react; he’s had green, mucousy diarrhea all. week. long.

His heinie is bright red with yet another acidic diaper rash.

It’s a horrible thing to change your child’s diaper and have them scream in pain and thrash to get away from being wiped – even if you’re using plain, warm water to rinse their little tushie.

Slowly but surely he’s getting better. I say slowly because after the antibiotic reaction began, he managed to find a stray bit of crayon and ate it and the reaction became immeasurably worse. So it’s taking some time for his little insides to straighten out.

When that happens? I just don’t know what to do.

I strongly believe he needs some gut rest. The poor little guy has been in the midst of one big succession of FPIES reactions non-stop since the end of August, at least. Giving his tummy some time off is probably just what he needs.

I also strongly believe he needs a food. That we need to re-trial the Ali or the quinoa ASAP. I’m just very worried that without a little time to rest and heal, he will have a very hard time finding ANY foods his body can handle.

Darrel and I don’t waste any time trying to get Zac some foods. But is it really wasting time to do gut rest if that helps him find safe foods easier?

I’ve been waiting on some response emails from our doctors, after deciding to cancel the appointments last week. Maybe, when they respond, I’ll have a better idea of what to do next.

Until then, we are going to work on getting our house cleaned out and de-catted after the cats are moved to my parents house.

We’ve learned that there is no real way to “de-protein” carpet, not to mention he has been handily removing carpet fibers and eating them, so for Zac’s health we may have to go further in the hole financially to replace our living room carpet with something hard. What’s the cheapest flooring option out there? Anyone have a suggestion? I’m guessing vinyl or linoleum is our best choice. We certainly can’t afford to extend the wood from the rest of the house as we had eventually planned to do.

I’m starting to get really scared. Zac has reacted to everything we’ve given him; even medications. Are we missing something? Is there something more going on with him? How could we find out? Is there some other doctor we should be trying to see?

So many questions, so many serious needs, and no real answers or ways to move forward. 

We’re in, to use a sailing expression, the doldrums. Our winds have stopped blowing and we’re just…sitting here. Waiting. Biding our time.

Fun, fun, fun. 

Well, never fear; I’m not personally depressed over anything, and neither is Darrel. We’re a little scared, but that’s getting to be a normal thing in our house. We’ll keep working through our FPIES mystery one step at a time until we solve the puzzle for our sweet Zac.

In the meantime, Jed has just BLOOMED developmentally! We finally found a safe bacon and sausage for him to eat, and he’s been chowing down on piggy for the last two weeks. Coinciding with that increase in protein consumption, his vocabulary has sky-rocketed, and his imaginative play has taken off!

He’s turned our small hallway into the “common room” – those of you who watch Thomas the Tank Engine might recognize the “Engine Driver’s Common Room” a la Mr. Perkins. That’s our hallway now: the “common room”. He creates his own little stories on what we are to do in there, and we must all play along or he gets very upset.

Last night, coming home from an errand he started talking about going through a tunnel. I suppose the trees DID look like a small tunnel for about 5 feet. Suddenly, it became the Time Tunnel from Dinosaur Train and we were going back in time! He told me a whole big story about going through the Time Tunnel as we made our way home!

I love watching him create new worlds in his head and tell me all about them. Does anyone know if there is a connection between the quantity of protein a child eats and developmental growth? It sure seems like the bacon and sausage consumption coincides directly with this new development.

In any case, it’s awesome. And I LOVE watching him eat!

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How are things in your neck of the woods?