Monday, June 5, 2017

Week 198: Controlled experiment

As I've mentioned a couple of times so far this spring, one of the most frustrating things about dealing with CF is that you never know quite what it is that you are battling at any given moment. Way back when, let's say in late April, we were pretty sure Lemon had a cold. We increased PT, and after a while the cold mostly went away, but not completely. Was it seasonal allergies catching us at the end of a cold? Was it a bacterial infection that took advantage of the nice environment created by the cold? Was it just allergies start to finish? No way to know. But, on the advice of our clinic, we went ahead and started Cayston, and things got a bit better. So, it could be that there were some bacteria, and Cayston killed them, or it could be that it was just some residual junk from the cold and it would have cleared up, Cayston or no. Or, a bad patch of allergies that cleared up as whatever was blooming stopped blooming. We ended up doing 3 weeks of Cayston because the symptoms (whatever their cause) were still lingering after two weeks. After 3 weeks, things were 99% better. So we stopped Cayston.

Then, Lemon started coughing again after a couple of days. What now? A resurgence of bacteria that weren't killed by Cayston because we should have done the full month? Or more allergy symptoms brought on by the continuous pollen onslaught that is a Wisconsin spring? Another cold? Something about the cough reminded me about using Flovent to control inflammation in the lung. We still had the inhaler in the house, so we started it again, and within a day or two, the cough was pretty much gone. So, it seemed likely that it was allergies, not bacteria, at least at this point. Then, we had two back-to-back warm days, days that were warm enough that leaving Lemon to sleep in his room with the windows shut and the air purifier running was just not possible. So, with trepidation, we turned off the air purifier and opened the window. Note to future self who considers this option: this is not a good idea.

48 hours of sleeping with the window open and the air purifier off and we had itchy eyes, runny nose, sneezing, and coughing. Having done as close to a controlled experiment as one can do on one's own child, we sealed up the house, turned on the air conditioning, and turned on the air purifier again. Tremendous improvement. I think I learned two main lessons from this whole exercise. The first is that Lemon's allergies seem worse this year than last. They are no joke, and we need to be really vigilant about having the air purifier running at all times when he is asleep. And if that means running the air conditioning more often than I would like (which, honestly, is about never), so be it. Second is that Flonase doesn't seem to do enough for him when it comes to allergies, he seems to have allergy symptoms that are really in his lungs, not just in his nose and eyes, so when we think about increasing something to combat allergies, we should be thinking more about Flovent and less about Flonase (and we certainly should not be thinking about both, since that results in bloody noses).

In other news, the CF Foundation liked the first piece that I wrote for them (on the different classes of mutations that can cause CF), so at some unspecified point in the future, that content will appear on their website. I'll be sure to point you to it when it does. They've also asked me to develop two additional pieces for them, which I'll get started on over the coming weeks. I'm very excited that all of this is finally happening--it's been my goal to make this kind of contribution to the CF world since Lemon was diagnosed. There's also been some vague mention of the idea that I could interview CF researchers about their studies, which would be really fantastic--stay tuned!





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