The answers to your post are going to show the differences in the standards of care across the country, BUT they may also be because of differences in patient's mutations or severity/presence of symptoms?
Or daughter is double DF508 and was diagnosed in August 2006. At her appointment last week I asked the doc: if she HADN'T cultured Pseudomonas aeruginosa ("PA"), would she still be on all of this lung therapy and his answer was YES, he would still have put her on everything she is on, except for the TOBI which is an inhaled antibiotic to treat the PA.
Katy is not really symptomatic for lung issues, but she is on: Albuterol, Hypertonic Saline, Pulmozyme, the Vest, and TOBI 28 on/off. She also takes Zithromax three times a week to treat lung inflamation. In addition she is on the usual: enzymes and Vitamax, and then Prevacid and Ursodiol (for high liver enzyme values). I think that's it.
Or daughter is double DF508 and was diagnosed in August 2006. At her appointment last week I asked the doc: if she HADN'T cultured Pseudomonas aeruginosa ("PA"), would she still be on all of this lung therapy and his answer was YES, he would still have put her on everything she is on, except for the TOBI which is an inhaled antibiotic to treat the PA.
Katy is not really symptomatic for lung issues, but she is on: Albuterol, Hypertonic Saline, Pulmozyme, the Vest, and TOBI 28 on/off. She also takes Zithromax three times a week to treat lung inflamation. In addition she is on the usual: enzymes and Vitamax, and then Prevacid and Ursodiol (for high liver enzyme values). I think that's it.