rachelsmom
New member
I just wanted to get some feedback from everyone. My daughter has been on IV antibiotics 5 weeks out of the last 8. She has grown over 100,000 stenotrophomonas. The first two weeks of antibiotics she was on Tobra, Ceftazadime?? and Timentin. She got better and her PFTS were back over 100% but I could tell there still was something not right. Two weeks later they did a bronch because she was back to breathing hard and very fatigued. That is when they found the steno and a fungus called scediosporum. We went back into the hospital and they put her on Tobra, Ceftazadime and Aztreonam. Two days later they took her off the Aztreonam and added Timentin again. They sent the stenotroph for sensitivity and it came back resistant to everything. Next step sent it away for synergy?? study in Canada and started her on sporonox for her fungus. Here we are week number four for the second set of IV antibiotics ...OH and they also added Bactrim oral. We went to clinic yesterday and her PFT's are back to over 100% and she seems to be better. The synergy study came back and none of the meds that she has been on were a combo that is supposed to work. So they left the picc line in stopped all antibiotics and are going to give her a week to see if the bacteria flares up again. I guess then they will go with a combo that is on the study. I am very frustrated and want her to get better. Does anyone have any experiences with this??? My daughter is 8 years old and we have never had to deal with an exacerbation this long.
Thanks for letting me vent and any feedback would be great
Teri
mom of cf girl 8 years old
Thanks for letting me vent and any feedback would be great
Teri
mom of cf girl 8 years old