what are your experiance with tobi and cipro??

B

bittyhorse23

New member
I have cultured PA for as long as I can remember. I still culture it now but usually only the non-mucoid strand unless I get an infection then it is the mucoid strand. I take TOBI 28on/28off and have been on it for about 4 years now. The only side affect for me is SOB. But I started adding albuterol to it and now that is lessoned. I also take Cipro when I am fighting off something, or like this winter, as preventative. I am also on Zithromax and Bactrim daily (lots of abx its a wonder anything can grown in there!). But I make sure to eat yogurt daily so I don't get sick. Sometimes I get the runs from the abx but it only lasts about a day. If I get really sick I end up on IVs and I get a nice blend of 3 different meds. I am also a lot older and a lot sicker than your daughter. But TOBI is good for some people and others can not tolerate it. Just keep your eye on her and see if it is too strong or not.

Hope this helps.
 
B

bittyhorse23

New member
I have cultured PA for as long as I can remember. I still culture it now but usually only the non-mucoid strand unless I get an infection then it is the mucoid strand. I take TOBI 28on/28off and have been on it for about 4 years now. The only side affect for me is SOB. But I started adding albuterol to it and now that is lessoned. I also take Cipro when I am fighting off something, or like this winter, as preventative. I am also on Zithromax and Bactrim daily (lots of abx its a wonder anything can grown in there!). But I make sure to eat yogurt daily so I don't get sick. Sometimes I get the runs from the abx but it only lasts about a day. If I get really sick I end up on IVs and I get a nice blend of 3 different meds. I am also a lot older and a lot sicker than your daughter. But TOBI is good for some people and others can not tolerate it. Just keep your eye on her and see if it is too strong or not.

Hope this helps.
 
B

bittyhorse23

New member
I have cultured PA for as long as I can remember. I still culture it now but usually only the non-mucoid strand unless I get an infection then it is the mucoid strand. I take TOBI 28on/28off and have been on it for about 4 years now. The only side affect for me is SOB. But I started adding albuterol to it and now that is lessoned. I also take Cipro when I am fighting off something, or like this winter, as preventative. I am also on Zithromax and Bactrim daily (lots of abx its a wonder anything can grown in there!). But I make sure to eat yogurt daily so I don't get sick. Sometimes I get the runs from the abx but it only lasts about a day. If I get really sick I end up on IVs and I get a nice blend of 3 different meds. I am also a lot older and a lot sicker than your daughter. But TOBI is good for some people and others can not tolerate it. Just keep your eye on her and see if it is too strong or not.

Hope this helps.
 
B

bittyhorse23

New member
I have cultured PA for as long as I can remember. I still culture it now but usually only the non-mucoid strand unless I get an infection then it is the mucoid strand. I take TOBI 28on/28off and have been on it for about 4 years now. The only side affect for me is SOB. But I started adding albuterol to it and now that is lessoned. I also take Cipro when I am fighting off something, or like this winter, as preventative. I am also on Zithromax and Bactrim daily (lots of abx its a wonder anything can grown in there!). But I make sure to eat yogurt daily so I don't get sick. Sometimes I get the runs from the abx but it only lasts about a day. If I get really sick I end up on IVs and I get a nice blend of 3 different meds. I am also a lot older and a lot sicker than your daughter. But TOBI is good for some people and others can not tolerate it. Just keep your eye on her and see if it is too strong or not.

Hope this helps.
 
B

bittyhorse23

New member
I have cultured PA for as long as I can remember. I still culture it now but usually only the non-mucoid strand unless I get an infection then it is the mucoid strand. I take TOBI 28on/28off and have been on it for about 4 years now. The only side affect for me is SOB. But I started adding albuterol to it and now that is lessoned. I also take Cipro when I am fighting off something, or like this winter, as preventative. I am also on Zithromax and Bactrim daily (lots of abx its a wonder anything can grown in there!). But I make sure to eat yogurt daily so I don't get sick. Sometimes I get the runs from the abx but it only lasts about a day. If I get really sick I end up on IVs and I get a nice blend of 3 different meds. I am also a lot older and a lot sicker than your daughter. But TOBI is good for some people and others can not tolerate it. Just keep your eye on her and see if it is too strong or not.

Hope this helps.
 
F

Foody

New member
Our son did well on the inhaled TOBI when he cultured at 15 months old. We chose not to do IV or oral and he hasn't cultured it since. Our clinic is aggressive also with first culture and if he would have cultured again in the same year they would have suggested on/off therapy.

We haven't been on any other antibiotics thus far...We do inhaled/oral GSH, DHA, Tumeric, daily probiotic, taurine, extra C, ADEKs and magnesium.
 
F

Foody

New member
Our son did well on the inhaled TOBI when he cultured at 15 months old. We chose not to do IV or oral and he hasn't cultured it since. Our clinic is aggressive also with first culture and if he would have cultured again in the same year they would have suggested on/off therapy.

We haven't been on any other antibiotics thus far...We do inhaled/oral GSH, DHA, Tumeric, daily probiotic, taurine, extra C, ADEKs and magnesium.
 
F

Foody

New member
Our son did well on the inhaled TOBI when he cultured at 15 months old. We chose not to do IV or oral and he hasn't cultured it since. Our clinic is aggressive also with first culture and if he would have cultured again in the same year they would have suggested on/off therapy.

We haven't been on any other antibiotics thus far...We do inhaled/oral GSH, DHA, Tumeric, daily probiotic, taurine, extra C, ADEKs and magnesium.
 
F

Foody

New member
Our son did well on the inhaled TOBI when he cultured at 15 months old. We chose not to do IV or oral and he hasn't cultured it since. Our clinic is aggressive also with first culture and if he would have cultured again in the same year they would have suggested on/off therapy.

We haven't been on any other antibiotics thus far...We do inhaled/oral GSH, DHA, Tumeric, daily probiotic, taurine, extra C, ADEKs and magnesium.
 
F

Foody

New member
Our son did well on the inhaled TOBI when he cultured at 15 months old. We chose not to do IV or oral and he hasn't cultured it since. Our clinic is aggressive also with first culture and if he would have cultured again in the same year they would have suggested on/off therapy.

We haven't been on any other antibiotics thus far...We do inhaled/oral GSH, DHA, Tumeric, daily probiotic, taurine, extra C, ADEKs and magnesium.
 
F

Foody

New member
I posted another article I found which highlighted the use of Cipro in Cf children...it actually eased my mind a bit. It is under this topic if you're interested <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=28628&enterthread=y
">http://forums.cysticfibrosis.c...d=28628&enterthread=y
</a>
 
F

Foody

New member
I posted another article I found which highlighted the use of Cipro in Cf children...it actually eased my mind a bit. It is under this topic if you're interested <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=28628&enterthread=y
">http://forums.cysticfibrosis.c...d=28628&enterthread=y
</a>
 
F

Foody

New member
I posted another article I found which highlighted the use of Cipro in Cf children...it actually eased my mind a bit. It is under this topic if you're interested <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=28628&enterthread=y
">http://forums.cysticfibrosis.c...d=28628&enterthread=y
</a>
 
F

Foody

New member
I posted another article I found which highlighted the use of Cipro in Cf children...it actually eased my mind a bit. It is under this topic if you're interested <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=28628&enterthread=y
">http://forums.cysticfibrosis.c...d=28628&enterthread=y
</a>
 
F

Foody

New member
I posted another article I found which highlighted the use of Cipro in Cf children...it actually eased my mind a bit. It is under this topic if you're interested <a target=_blank class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=28628&enterthread=y
">http://forums.cysticfibrosis.c...d=28628&enterthread=y
</a>
 
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