symptoms

[rachelsmom]

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

 

[rachelsmom]

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

 

[Dustin82]

Hi I am 22 years old male with CF and it was June 2000 or 2001 I when in for a basic tune up just to get my PFT up and if u asked me I was feeling great. But anyway I went in got a pic line in and with in less then 24 hour they had to rush me to the ICU unit because i went down hill did not feel good at all. I think to this day know one truly know what did that to me they think it was a med. that they ran in to my Pic line and my body when in to shock and rejected it but they dont know for sure. They end up taking the Pic line out and toke me off the Med. and I started getting better slowly. I was in for 3 weeks and it normal is 2 weeks. that I would have to say that was pretty scary time in my life. All I can say is just what your daughter because u dont want what happen to me happen to her. I just want to say that it was not the doctor fault or the hospital fault it just happenbecause the doctor said that I had this med. before and there was no problem then but that time it did not help me and I have not had it sents. I just want u and everyone else to know that if u feel bad or feel weird tell the doc. I sure wish I would have when I was feeling bad. And I was not even feeling that bad I just figure I was having a bad day u know all CFer have an off day everywant and awhile. I dont know if I helped u or not but now u know what could happen if u dont think a med. is working like it should pretty scary stuff Dustin82

 

[Dustin82]

Hi I am 22 years old male with CF and it was June 2000 or 2001 I when in for a basic tune up just to get my PFT up and if u asked me I was feeling great. But anyway I went in got a pic line in and with in less then 24 hour they had to rush me to the ICU unit because i went down hill did not feel good at all. I think to this day know one truly know what did that to me they think it was a med. that they ran in to my Pic line and my body when in to shock and rejected it but they dont know for sure. They end up taking the Pic line out and toke me off the Med. and I started getting better slowly. I was in for 3 weeks and it normal is 2 weeks. that I would have to say that was pretty scary time in my life. All I can say is just what your daughter because u dont want what happen to me happen to her. I just want to say that it was not the doctor fault or the hospital fault it just happenbecause the doctor said that I had this med. before and there was no problem then but that time it did not help me and I have not had it sents. I just want u and everyone else to know that if u feel bad or feel weird tell the doc. I sure wish I would have when I was feeling bad. And I was not even feeling that bad I just figure I was having a bad day u know all CFer have an off day everywant and awhile. I dont know if I helped u or not but now u know what could happen if u dont think a med. is working like it should pretty scary stuff Dustin82