M
Mommafirst
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I'm really sorry to hear this. I have nothing to add except big ((((HUGS))) as you add more crap into the fight for this awful disease.
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Pseudomomas
- Thread starter Rebjane
- Start date
i have been through the same thing with my dd twice. It is heart breaking to learn this. in our case she had no symptoms so it was like a cold shower. If it is any help, the fact that it is low growth is a good thing, my dd also had small colonies each time and we eradicated it after the first round of TOBI (we were prescribed 3 rounds though).
i have been through the same thing with my dd twice. It is heart breaking to learn this. in our case she had no symptoms so it was like a cold shower. If it is any help, the fact that it is low growth is a good thing, my dd also had small colonies each time and we eradicated it after the first round of TOBI (we were prescribed 3 rounds though).
i have been through the same thing with my dd twice. It is heart breaking to learn this. in our case she had no symptoms so it was like a cold shower. If it is any help, the fact that it is low growth is a good thing, my dd also had small colonies each time and we eradicated it after the first round of TOBI (we were prescribed 3 rounds though).
It was like a CF diagnosis all over again when I got the call. On a positive note, Max tolerated the Cipro and Tobi with no problems and the pseudo was eradicated after one cycle of treatment and it hasn't shown up again (really hoping that it stays away forever). Good luck with the new treatment & I am really hoping that it eradicates it & that she gets a clean culture next time!!!
It was like a CF diagnosis all over again when I got the call. On a positive note, Max tolerated the Cipro and Tobi with no problems and the pseudo was eradicated after one cycle of treatment and it hasn't shown up again (really hoping that it stays away forever). Good luck with the new treatment & I am really hoping that it eradicates it & that she gets a clean culture next time!!!
It was like a CF diagnosis all over again when I got the call. On a positive note, Max tolerated the Cipro and Tobi with no problems and the pseudo was eradicated after one cycle of treatment and it hasn't shown up again (really hoping that it stays away forever). Good luck with the new treatment & I am really hoping that it eradicates it & that she gets a clean culture next time!!!
Thank you for the input. Fortunately, maggie is not sick right now, knock wood. I started the Cipro and TOBI today. She got a little upset stomach from the TOBI, but otherwise tolerated it so far. I am really hoping we can eradicate it but we have had no luck eradicating MRSA in her since she started culturing at 2 1/2 years old so I feel the germs love Maggie's lungs<img src="i/expressions/face-icon-small-sad.gif" border="0"> It's a no school snow day today which is good so we can adjust to all these new meds. The plan is to culture her after 28 days of TOBI, one week after she finishes; I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.
Thank you for the input. Fortunately, maggie is not sick right now, knock wood. I started the Cipro and TOBI today. She got a little upset stomach from the TOBI, but otherwise tolerated it so far. I am really hoping we can eradicate it but we have had no luck eradicating MRSA in her since she started culturing at 2 1/2 years old so I feel the germs love Maggie's lungs<img src="i/expressions/face-icon-small-sad.gif" border="0"> It's a no school snow day today which is good so we can adjust to all these new meds. The plan is to culture her after 28 days of TOBI, one week after she finishes; I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.
Thank you for the input. Fortunately, maggie is not sick right now, knock wood. I started the Cipro and TOBI today. She got a little upset stomach from the TOBI, but otherwise tolerated it so far. I am really hoping we can eradicate it but we have had no luck eradicating MRSA in her since she started culturing at 2 1/2 years old so I feel the germs love Maggie's lungs<img src="i/expressions/face-icon-small-sad.gif" border="0"> It's a no school snow day today which is good so we can adjust to all these new meds. The plan is to culture her after 28 days of TOBI, one week after she finishes; I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.</end quote></div>
I guess there is no consensus as to what the optimal length of TOBI treatment is once PA shows up for the first time. We did 3 rounds and cultured every month. I still culture her every month, this is how we discovered she had PA the second time, otherwise it might have remained hidden in the lungs for God knows how long
I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.</end quote></div>
I guess there is no consensus as to what the optimal length of TOBI treatment is once PA shows up for the first time. We did 3 rounds and cultured every month. I still culture her every month, this is how we discovered she had PA the second time, otherwise it might have remained hidden in the lungs for God knows how long
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.</end quote>
I guess there is no consensus as to what the optimal length of TOBI treatment is once PA shows up for the first time. We did 3 rounds and cultured every month. I still culture her every month, this is how we discovered she had PA the second time, otherwise it might have remained hidden in the lungs for God knows how long
I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.</end quote>
I guess there is no consensus as to what the optimal length of TOBI treatment is once PA shows up for the first time. We did 3 rounds and cultured every month. I still culture her every month, this is how we discovered she had PA the second time, otherwise it might have remained hidden in the lungs for God knows how long
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Rebjane</b></i>
<br />
<br />I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.</end quote>
<br />
<br />I guess there is no consensus as to what the optimal length of TOBI treatment is once PA shows up for the first time. We did 3 rounds and cultured every month. I still culture her every month, this is how we discovered she had PA the second time, otherwise it might have remained hidden in the lungs for God knows how long
<br />
<br />I guess I am not sure why some kids gets 3 rounds and Maggie is ordered for one with a recheck in culture.</end quote>
<br />
<br />I guess there is no consensus as to what the optimal length of TOBI treatment is once PA shows up for the first time. We did 3 rounds and cultured every month. I still culture her every month, this is how we discovered she had PA the second time, otherwise it might have remained hidden in the lungs for God knows how long
We had been on TOBI for many years, on the 28 days on, 28 days off cycle. My daughter always felt better when she did the TOBI. She is off now as she is doing the Cayston 28 on, 28 off. The only side affect she had on TOBI was that her voice got really raspy, sounded kind of like an old women that had been a 2 pack a day smoker-we told her it made her sound sexy-she found that funny. We don't worry too much when the doc puts her on new meds, we just do it as prescribed. One thing that has made her stronger and her lungs stay healthy is exercise. She is a runner and her doc loves it. I wouldn't worry too much about how long Maggie needs to be on TOBI. all the meds and treatments are just a way of life. We are getting ready to send our daughter off into the college world in the fall-and that is way scarier than the CF.
We had been on TOBI for many years, on the 28 days on, 28 days off cycle. My daughter always felt better when she did the TOBI. She is off now as she is doing the Cayston 28 on, 28 off. The only side affect she had on TOBI was that her voice got really raspy, sounded kind of like an old women that had been a 2 pack a day smoker-we told her it made her sound sexy-she found that funny. We don't worry too much when the doc puts her on new meds, we just do it as prescribed. One thing that has made her stronger and her lungs stay healthy is exercise. She is a runner and her doc loves it. I wouldn't worry too much about how long Maggie needs to be on TOBI. all the meds and treatments are just a way of life. We are getting ready to send our daughter off into the college world in the fall-and that is way scarier than the CF.
We had been on TOBI for many years, on the 28 days on, 28 days off cycle. My daughter always felt better when she did the TOBI. She is off now as she is doing the Cayston 28 on, 28 off. The only side affect she had on TOBI was that her voice got really raspy, sounded kind of like an old women that had been a 2 pack a day smoker-we told her it made her sound sexy-she found that funny. We don't worry too much when the doc puts her on new meds, we just do it as prescribed. One thing that has made her stronger and her lungs stay healthy is exercise. She is a runner and her doc loves it. I wouldn't worry too much about how long Maggie needs to be on TOBI. all the meds and treatments are just a way of life. We are getting ready to send our daughter off into the college world in the fall-and that is way scarier than the CF.