Monday, November 21, 2016

Week 170: Off label

This week, I went to Chicago for a night to attend a conference for work. This was my first night with zero children since October of 2014. So, how did it feel to be solo in a city with no one but other grown-ups to talk to? AMAZING. I will even forgive my colleagues for stretching our work dinner until after 11pm so that my blissful night of uninterrupted sleep was only 7 hours long. I'm hoping this marks the beginning of a happy tradition whereby I get out of dodge at least once or twice a year. But, now I'm back in the thick of dodge, and we're dodging, or trying to anyhow.

Here's where things stand. Lemon's been on oral levofloxacin since a week ago Friday to fight off the resurgence of the thing that we've been fighting for two months now. Ready for something startling? Oral levofloxacin didn't work the first time we tried it against whatever this is, and it isn't really doing the trick this time, either. It's pretty much done what it did before, which is to say that it has gotten Lemon to the point where he feels fine but is still coughing a bit. Not a cough that would make anyone who doesn't know the back story think anything at all was wrong with him. But, we all know the back story here. We know enough to grasp that if he isn't absolutely, 100% at respiratory baseline and we stop the antibiotics, whatever this is will just come roaring back within a few days. So, what now?

As you might imagine, I put this question pretty directly to our care team at the CF clinic, pointing out that doing the same thing over and over again and expecting a different result is, well, you know. I asked what ideas they had to break the cycle. They came back with a couple of things. First, they want to switch Lemon's acid reducing medication from Protonix back to Zantac, because a study was presented at the most recent CF conference that kids who take proton pump inhibitors (like Protonix) have more respiratory infections. I said I was happy to try that, but that they should not forget that Lemon was on Zantac for the first 2.5 years of his life and got just as many respiratory infections as he does now, so I hardly think that will do anything.

The other idea that they had is that maybe Lemon has reflux that is causing or contributing to his problems. They know that he has already had two GI imaging studies, neither of which has shown evidence of reflux. Of course, no evidence of reflux isn't proof that there isn't any, just that it wasn't seen. But, he's also never had any symptoms that would suggest that he does have reflux. In light of all that, I'm hardly eager to do the test they have in mind, which would involve placing a sensor in Lemon's esophagus for 24 hours to measure the pH in there. Oh yeah, they put the sensor in through your nose and then tape the tube to your face and connect it to a data recorder that's in a little pack that you have to carry around while the test is going. What could be better? So, no, not unless there's a really compelling reason.

And, that was pretty much the end of the idea list. I hadn't wanted to plant the ideas that I'd had, because I wanted to hear what the clinic folks would come up with. But, being unimpressed, I wrote back to them and asked about trying another course of Flovent, as we had done back in March in response to Lemon's lungs looking inflamed during the bronchoscopy. Or, how about trying inhaled antibiotics rather than oral since oral really doesn't seem to do the trick for us?  I just heard back today that we can move forward on the process of trying these options. Both the Flovent and the inhaled antibiotic that our clinic suggested (Cayston) will be off-label for Lemon. He doesn't have asthma (Flovent) and doesn't culture Pseudomonas and is less than 6 years old (Cayston). So, those are getting routed to our insurance to see what they will agree to.

In the mean time, we are going ahead with trying to get a second opinion in Milwaukee, but more obstacles there--that hospital is out of network for us. So, I have to file a pre-approval form (filled out not by the CF clinic, but by Lemon's PCP who has literally seen him once) and then the insurance company gets 15 business days to think about it and give us a decision. So, with the holidays coming up, I would be shocked if we get that second opinion before the door closes on 2016.

With all this going on in the background, I am glad that, following the great travel debacle of 2014, we resolved not to try to travel for Thanksgiving any more. I am still sad that we will not be in Boston surrounded by family for the holiday, but the disappointment of never having planned to go pales in comparison to the disappointment of planning to go and canceling. And, I'm hoping that soon we'll have something new to be thankful for--namely, a treatment plan for Lemon that actually works.

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