Cystic Fibrosis

[Guest]

We are approaching 1 year since our daughter was diagnosed with CF. She has been on TOBI continually since that time. She cultured Psuedomonas A when diagnosed. 6 cultures, one during a bronchoscopy have all been negative.

Are there any reasons to DC TOBI? We have kept her on this drug continually. We did the research regarding resistance ect... We took the risk and did not do the 28 on 28 off.

She is doing unbelieveably well..

The question... Is use of TOBI a preventative for acquiring (new) psuedomonas a? Beyond resistance to the drug, are there any reasons to stop giving the drug?

[Guest]

TOBI is an excellent medication for cystic fibrosis patients and it has shown efficacy in treating pseudomonas and improving lung function. At her young age I would definately be worried about resistant organisms. In some of the trials patients on TOBI developed ringing in their ears, something child sometimes can't tell you. So this is a tough question to answer. The general practice is to use it in the alternating dosing in patients who have pseudomonas on a culture result. Consulting with your pediatric pulmonologist( I hope who is a CF specialist as well) is a good idea so you can decide what is best in your daughter's case.
[quote] We are approaching 1 year since our daughter was diagnosed with CF. She has been on TOBI continually since that time... [/quote]

[Guest]

Thanks for the reply... We do see a Pediatric Pulmonology group in Dallas Texas.The two doctors we see actually differ on opinions in this area.

We are hoping new inhaled anitibiotics such as aztreonam will be developed for delivery like TOBI. We considered using colistin or ceftazidine/ticarcillin with TOBI but decided against it. These drugs are not engineered or formulated for inhalation delivery.

We will continue to seek answers. I will keep you informed.

Thanks again!!
[quote] TOBI is an excellent medication for cystic fibrosis patients and it has shown efficacy in treating pseudomonas and improving lung function. At her young age I would definately be worried about resistant organisms... [/quote]