Thursday, August 6, 2015

If he's smart enough to ask the question

It has been a busy summer! Health has been good (knock on wood), weather has been bad, and what I'll say about the kids is that I'm just about ready for school to start again.

Drew has an MRI and CT scan tomorrow. He's not sick, which is really why we are doing it now. He's still growing achromobacter in his lungs, that ugly beast of a bacteria that has set up shop and colonized his airways. I found a protocol for achromobacter eradication that another CF mom had shared with me from the CFRI conference several months ago, but its pretty intense and we are trying to decide if its something we want to do. On one hand, the bacteria  seems to be reasonably well managed with the inhaled antibiotics that we are on (constantly). On the other hand, we worry about the silent damage that may be happening to his airways and if we could take away the chance of that happening by getting rid of the bacteria. The chances of us getting rid of it, truly eradicating it, are equivalent to us finding a pin prick on a tennis court. His lungs are vast, and bacteria is tricky.

Talking with his doctor at our last appointment we decided that it might not be a bad idea to do a CT scan to compare it to his prior CTs scans to see if lung damage is happening. It will inevitably happen in CF, but we hope to prolong the time that we see damage as long as possible (that's the goal of the inhaled antibiotics we are currently on to treat the achromobacter). The protocol that I had suggested was seven months on an oral antibiotic combined with regular inhaled antibiotic....for seven months. Her concerns were both resistance to antibiotics that currently work for him and also the side effects of the prolonged use of antibiotics, like GI issues. We've finally been able to get some weight on Drew and with strong oral antibiotics he sometimes has an upset stomach. I'd hate to wreak havoc on his GI tract to save his lungs; we need both!

So we decided to take a look before we make a decision. We decided that if his lungs look good (which I'm less optimistic about than I've ever been before) then we will stay the course of inhaling Ceftaz for 14 days and Tobi for 14 days, indefinitely. If there is some significant changes, bronchiectasis, then we will reevaluate our plan and try to be more aggressive in treating it.

I found out when we decided to do the CT scan that there is a research study underway trying to understand the value of MRI in measuring lung damage, as the risks of MRI are negligible since they use magnets rather than the radiation that a CT scan uses. I remember a presentation at NACFC a few years ago weighing the pros and cons of a CT scan, with some folks not wanting to expose patients to radiation of a CT scan and other feeling the benefits of knowing whats happening in the lungs giving a better opportunity to treat outweighed the risks of minimal radiation exposure. I'm on the fence. The exposure is minimum, but when you add up all of the different scans and test and everything that a kid with CF has done in a lifetime, the exposure to radiation is not insignificant, and so I appreciate that science brought us the MRI and the thoughtfullness or curiosity or whatever that led researchers to compare its value to the CT scan to understand how one might eventually replace the other. I digress.

I agreed to have the MRI done along with the CT scan as long as we didn't need sedation. After some discussions with the doc and the researchers, everyone agreed to try. With the scan coming up this week, I reviewed the IRB (the document that explains the research, what is happening, the associated risks, etc) and decided to talk to Drew about it. I also offered him $5 to hold still for the test so we can avoid sedation. He asked me why he had to have it done and if it was going to hurt, and I tried my best to explain that to him. After our conversation, I emailed the research coordinator and asked if they had materials to explain the IRB to a 5yr old. While they didn't, she did share some images of the machines that I was able to show Drew to hopefully allay some fears. But it got me thinking about how I wished the IRB was directed to him. I'm fine with a copy for me, explaining things at a different level, but if we could involve patients at a younger age understanding why they participate in this type of thing, what exactly is going to happen, how it will feel and how it will help them, maybe it will give them a deeper understanding of their disease, a deeper confidence in the teams that care for them, a deeper appreciation for the entire system that is in place to keep him well. I felt that if he was smart enough to ask the question then he deserves a smart and honest answer. I would love to work on a project with kids as young as 5 translating overly complicated IRB protocols into common sense, easy to understand documents. Maybe I will :)

Stay tuned for results on the MRI/CT study!


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