Update: I talked to the CF docs and they agree with me, that treating with antibiotics when hes not symptomatic and we haven't cultured anything is not necessary!
Drew had his sinus surgery follow up appointment yesterday. I personally think he looks and sounds great. Since its still cold season, a little runny nose here and there wasn't bothering me much or causing concern because hes so much better than he was before the surgery. The doctor didn't totally agree with me. He thought he sounded better and looked improved, but when he looked in his nose he still saw a fair bit of mucus. He used a suction to pull it out - definitely not Drew's favorite part of the trip. He said that based on what he saw, he wanted to put him on antibiotics. I had some hesitation with this, as the simple fact that he has CF would cause him to have some extra mucus/congestion, so jumping right to infection isn't my favorite thing to do. When he was completely clogged and had the surgery, that mucus didn't show any bacteria growing, so I didn't understand why some new, milder (in my opinion) congestion would merit antibiotics when we weren't even sending it to the lab to be tested. I do understand the doctors desire to get him as good as we can, but I think hes doing pretty good, all things considered.
Then the doctor told me he actually wanted to put him on a nasal drop antibiotic as well, something called Ciprodex. I believe its normally an ear drop, but he wanted me to put it in his nose instead. Keep in mind that this ENT doctor is one of the top ENT surgeons in the country, so I do trust his expertise. However, he's not a CF doc and I felt that he was somewhat overlooking the fact that Drew has CF. Cipro is an antibiotic often used to treat pseudomonas. Whenever we've had pseudomonas in the past, the CF doctors treat very aggressively with two antibiotics at the same time because pseudomonas is a very clever bacteria and easily morphs into different, antibiotic resistant forms. By hitting it with two antibiotics at once, it gives them a better shot of killing it because it can't hide and transform with two different things trying to kill it. The most important thing here is that Drew doesn't have pseudomonas right now, so treating it with an antibiotic, in my opinion, is ridiculous.
But here's the thing. If you or I were to go to the doctor for something like a sinus infection or an ear infection or something, the doctor takes a look at us a prescribes something that is commonly known to kill the bacteria that commonly causes the infection they are seeing. They don't take a mucus sample from you and send it off to a lab to see what drugs will work best for getting rid of it. With the CF clinic, its pretty much the way that they treat you. Because there are so many infections with CF that require antibiotics to kill bacteria and preserve lung health, if they just treated every infection with what they though would get rid of it, we'd be building up a ton of bacteria that's resistant to most antibiotics. The way they do things is smart. So when a doctor (any doctor) wants to treat Drew with antibiotics before testing to see if he's just got a virus or if hes actually got bacteria, and then what bacteria it is and what antibiotic will best get rid of it, I'm hesitant. I need antibiotics to work for this boy for as long as humanly possible. He needs them to, because once they stop working, bacteria starts wining and lung function starts declining and infections become more and more life threatening.
So I called Drew's CF doc to discuss what the ENT had prescribed. If she thinks that the oral antibiotic would be alright to give him to try to clear him up a little more then I'll be okay with that I guess. The nasal drop is the one that I'm not going to give him, unless they both test for pseudomonas and get a positive and add another antibiotic that is effective against pseudomonas so that we can double team whatever kind of pseudomonas infection may be causing his trouble. The tests done 4 weeks ago showed no pseudomonas, so unless he's gotten it since then, I think that treating with the Cipro is probably going to be throw out.
Its hard, I think, dealing with all of this crap. You really have to be on your toes and truly be an educated advocate for your kids health. If I didn't raise questions and concerns, or if I didn't know to raise questions and concerns, his health could and would suffer. I trust his CF doc more than anyone. And the other doctors that we have to see I also respect and trust, but I have to remember that I am more of a CF expert than they are and challenging them is only for our own good.
So for now I'm holding on the antibiotics because I don't totally believe that he needs them, and when I hear back from CF, we will make an informed decision. And then educate whoever will be taking care of these kids on how to give him whatever he needs if I ever have this baby.
