Tuesday, July 8, 2014

Week one on RTA meds - still pinching myself.

I am still pinching myself that we have a diagnosis. I am so grateful that the reason for JAM's failure to thrive has been discovered.  It will take a while for his system to regulate and stabilize, but we are already starting to see some benefits. Given that RTA could be life threatening or cause rickets, we are so very happy that this kidney disease was diagnosed so early (relatively speaking) in his life.

Down sides:
While we are in the early stages of this, he will have to get blood tests regularly to see what the meds are doing to his Ph levels. First test comes next week. Then it's every few weeks until he's at a good level, then at least every three months for the first year on meds.  That said, it's better than if he had diabetes, so all told, not too bad. Too bad that he is a very very difficult poke. In order to get a good draw on the first try, we have to drive to the children's hospital 45 minutes away. Even then, they struggle to get blood on the first try. [Last time we had a blood draw the phlebotomist took one look at J, remembered him from the previous draw, and immediately called for backup.]

While I thought solving his weight gain issues would gain us a free pass to take out his g-tube finally (he hasn't really needed it for over six months), the nephrologist recommends we keep it in, at least until we are sure he'll take the drug orally. He mentioned that he knew a kid who had a g-tube given to him specifically for RTA -- he wouldn't tolerate the drug orally, and they had to give it to him somehow, so they put him through surgery, gave him a g-tube, and administered the drug through the g-tube. I thought this was extreme until I learned how much medicine J has to take daily. It's only one medicine, but he gets a lot of it three times a day, at least for now. There's no sneaking it in to one swallow, because too much has to be given for that. We haven't even tried to give it orally yet. It's super sweet (smelling at least), and so I could see how this salt-loving boy would utterly reject it, even if we tried to hide it in applesauce or some other yummy treat. We'll wait until he's a bit better at eating and until things are stable with his Ph levels before we try giving him the drug orally. And then we'll wait several months more before we remove his feeding tube. (Sigh.) It's okay, it's kind of nice to have as a back-up.

How he's tolerating it:
At first the drug seemed to make him nauseous. Either that or he had a headache (a distinct possibility since E and I were both fighting a bug that gave us a huge headache). So maybe it wasn't the drug. But he wasn't feeling that great.

Now he's doing a lot better.  He's still more irritable than normal, but he's turning a corner. We're only five days in, but we're starting to see small changes.

Up sides:
The biggest has been in his gut. [Okay, TMI warning here -- you may want to skip this paragraph.] He would never ever have normal bowel movements. He'd go to both extremes -- sometimes at the same time. Theoretically (from an RTA standpoint) this might be because muscle weakness impacts bowel function, as your bowels are one big muscle. Coordinating that muscle when you are weak is hard. Plus, he has extra scarring from his NEC (bowel surgery). This issue has resolved itself already. It's bizarre. We kept waiting for constipation to hit again, but it hasn't. So, we know his muscles are  now working better. He's stronger.  Maybe we can stop being followed by GI in the next year.

His breathing seems slightly improved. His energy level as well. Not enough to know for sure that it's better, but he's going in the right direction.

All in all, I'm thrilled.

I still haven't found any good resources for RTA. And I have no idea why J has it. A friend says you can get it from sniffing too much glue (there's some truth to this). Not sure where Jonathan's gotten all that glue to sniff, maybe he's been hiding under his crib mattress.


  1. Glad for all the good things! Hope the not-so-good resolve themselves as soon and as much as possible.
    Can't wait to watch J grow, grow, grow!


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