Latest Clinic Visit

We had a routine clinic visit on Monday morning and it went pretty well. We're still waiting on the results of his culture and are hoping it comes back clean. Two other things that came from the appointment was scheduling a hi-res CT scan and a discussion about whether to start on Azithromycin three days a week.

First, the CT. We had talked about it with our doctors before and decided that now was a good a time as any to get it done. Our clinic has started to talk more about this procedure recently, as some studies have shown that a hi-res CT scan can show bronchiectasis early on better than any other test and medicines and therapies can be adjusted to try to better clear the airways preventing infection and further bronchiectasis. Bronchoscopy is good at looking at mucus plugging and other airway abnormalities, but can't see into the smaller, lower airways where lung damage starts. The hi-res CT is useful over time to see how lung disease progresses. I hate talking about lung disease in my 1 year old, but with Cystic Fibrosis, its just the reality. Anyway, his doctor said that she suspects that they will see some lung disease just because of his inability to appropriately clear secretions. She said that some kids have it at this age and some don't, but if she had to guess, she would suspect that he has some damage. The procedure is non-invasive, but he does have to get put under for it. We have it scheduled for the end of the month. I won't worry about it until a little later on :)

The other thing that we discussed at this clinic visit was putting Drew on regular Azithromycin. Azithromycin is an antibiotic (you may know it as a z-pak) used to treat common bacterial infections. But it wouldn't be used as an antibiotic in Drew's case. Here's some information about this from the CFF website:

Azithromycin is a commonly used antibiotic made by Pfizer, Inc. and sold as Zithromax^®. Many people have taken this drug to treat pneumonia, sore throats or ear infections.

In 1999, the Cystic Fibrosis Foundation recognized that azithromycin might help people with cystic fibrosis (CF) who have a positive sputum culture for Pseudomonas aeruginosa(Pseudomonas) and designed a clinical trial to test that possibility.

During the first clinical trial, lung function (FEV₁), weight, use of antibiotics, and days spent in the hospital to treat lung infections were watched for changes. The people with CF who were involved in the study were split into two groups. One group took a placebo—an inactive pill that has no treatment value (sometimes called a sugar pill). The other group took azithromycin.

During this trial, neither the patients nor the CF researchers knew which patients took azithromycin or placebo pills. Over six months, the group that took the azithromycin had about a 6 percent improvement in their lung function, fewer pulmonary exacerbations, took fewer antibiotics (other than azithromycin) and had an increase in their weight. They also spent 47 percent fewer days in the hospital for the treatment of a lung infection.

In the second study, the kids with CF did not have Pseudomonas for at least one year, were 6 to 18 years of age, and had mild to moderate lung disease, although most had mild lung disease.

Over six months, the group that took the azithromycin had fewer exacerbations, took fewer oral antibiotics and had an increase in their weight.

Lung function was about the same in those who took placebo and those who took azithromycin. However, the people in the azithromycin group reported less coughing than the group taking the placebo.

That sounds like reasonably good evidence for me to get him on Azithromycin. My only hesitation is that it then takes Azithromycin out of the running as an antibiotic when he does get a lung infection, and Azithromycin is something that we've had reasonable success with when we needed to use it in the past. If Drew would be on Azithromycin 3 days a week ongoing, his body will build up a resistance to its antibiotic effects, thus eliminating it as an effective treatment option for us. There are plenty of other antibiotics that he can get put on if he gets sick, but hes on so many antibiotics all the time that there is always a fear of his body building up resistance and us not having the options we need to treat his infections.

We decided to see what we see in the CT and then make a decision on the Azithromycin. If he does have reasonable lung disease and bronchiectasis then we will more likely than not go ahead and get him on it. Maybe if he looks good too, I'm just not sure yet.

Cross your fingers and say a prayer for a good culture report!