Saturday, June 9, 2012
So it turns out that we have a different form of pseudomonas than CF people normally get. The common pseudomonas is aeruginosa and the strain that Drew has is called fluorescens.Its not a good or bad thing, its just a different kind. So the good aspect is that the pseudomonas aeruginosa that we eradicated last September is still gone! We are going to take the same approach and try to eradicate this pseudomonas now too. The doctors are still concerned that with the condition of his airways, Tobi wouldn't be our best option. You may recall from our past uses of it Drew's terrible reactions that nearly landed us in the hospital. The other inhaled option, Cayston, caused similar breathing difficulties. Even though its been almost a year, they think its best to wait a little longer to try those again as we don't want to make things worse. In the past we have used IV Ceftazadime and Tobramycin and been able to get rid of it. But this time we are going to approach things differently. We are going to try just using Cipro orally for 30 days. One common treatment plan for pseudomonas is inhaled Tobi for 28 days followed by Cipro for 30 days, and the doctor told us that recent research has shown no real difference in people who did just one or the other vs both. So since we don't use Tobi right now, we are going to see what Cipro can do for us. He's been on it for 1 day and already puked once. Its just so strong it upsets his stomach. And it causes a terrible sun sensitivity so we need to keep the boy covered up when we are outside...which is all the time. Oh well. The antibiotics will end just before we leave for our trip back east, and once we return we will re-culture him to see if we were able to get rid of it. If its not gone, then we will go to IV to try to get rid of it and hopefully succeed. So there is a plan in place and I'm happy with it. Hopefully things remain under control and we can enjoy our trip!