Monday, March 28, 2011

Anniversary Visit

We had Drew's 1yr visit at the CF Clinic today and it went really well! All of his bloodwork came back good - liver is working good, kidneys doing what they should, vitamin levels are all where they should be. It was pretty uneventful actually, which I'll take any day!

We're supposed to re-start the Tobi on Saturday. Because he looks and sounds so good, there is some hesitation to treat him. There is concern that even with a negative culture, Pseudomonas might still be growing down in his lower airways that we wouldn't catch without a bronch. Treating him with Tobi would be to be on the safe side and get the medicine in there to kill off the bacteria that may exist lower than a throat swab could detect. On the other hand, we don't necessarily want to treat him with an antibiotic that he doesn't need lest he build up a resistance to it, though I learned today that inhaled antibiotics work a little differently than oral or IV and don't usually become ineffective even if given over long periods of time. So the downside of not treating him is that we miss bacteria that might be down in his lower airways. Anyway, they did a throat culture today and we're going to wait to see how that turns out. Obviously if it shows pseudomonas then we will start again with the Tobi and Cipro combo again this Saturday (the start of our 28 day cycle) and if its negative I think we're going to wait until we get another positive culture, either orally or from a bronch. Obviously my hope is that we never get another positive culture...ever. We'll see what happens.

We're trying a new method for calculating enzyme dosage. Drew's poop has been on the rather intense side, and we need to get his enzymes in order. Not many people in the US actually calculate out enzymes per grams of fat, but its a common practice in Australia and New Zealand. If it helps with the pooping problem then I'll do it! The good news is that his weight isn't suffering so we have some space and time to get it all sorted out before it would become a problem.
I also talked with our fellow (who will become a full fledged member of the faculty at Children's in July and likely our primary CF doc) about the mutations and the class of mutations and she had the chance to talk to J.P. Clancy again (lead CF researchers on the CFTR mutation) and after some thought and research he said it was probably unlikely that the new drug coming out will be affective on the mutation Drew has. BUMMER!! The drugs don't work on "classes" of mutations, but rather specific cells, and the drug that is on its way to FDA for approval doesn't target the cellular issue that Drew's got. Research has come so far, but there is still so much more that needs to be learned and understood. The good news is that there are a ton of other drugs coming down the pike that will target the mutations that Drew has. I've got a lot of faith in Dr. Clancy and I haven't even met him yet!

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