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What to do between rounds of tobi?

A

Allansarmy

Guest
My son (15 years old now almost 16). Has always rotated Tobi for 28 days on and 28 days off - roughly speaking. He uses this medication twice daily when he is taking it. He does get lung infections about every 2 months. My son has not cultured pseudomonas in a long time (several years in fact). However, he did culture MRSA on more than one occasion. So my son gets put on Bactrim DS when he goes to coughing a lot and it turns to the usual thick green phlegm.

My son just talked him self out of a hospital stay last Thursday asking (more like pleading) with the doctors to put him on another round of antibiotics. So they put him on the following (Hypertonic Saline, Bactrim, Levaquin). This is in addition to his Pulmosyme, Tobi and albuterol. They said come back in 3 weeks and if he is worse or not better, in he goes again <img src="i/expressions/face-icon-small-sad.gif" border="0">


One question for you, are you getting your daughter outside and getting her exercise. They are finding more and more people with CF that lack Vitamin D. My son has been like that since he was small. We need to give him Vitamin D supplements and are encouraging exercise.
 
A

Allansarmy

Guest
My son (15 years old now almost 16). Has always rotated Tobi for 28 days on and 28 days off - roughly speaking. He uses this medication twice daily when he is taking it. He does get lung infections about every 2 months. My son has not cultured pseudomonas in a long time (several years in fact). However, he did culture MRSA on more than one occasion. So my son gets put on Bactrim DS when he goes to coughing a lot and it turns to the usual thick green phlegm.

My son just talked him self out of a hospital stay last Thursday asking (more like pleading) with the doctors to put him on another round of antibiotics. So they put him on the following (Hypertonic Saline, Bactrim, Levaquin). This is in addition to his Pulmosyme, Tobi and albuterol. They said come back in 3 weeks and if he is worse or not better, in he goes again <img src="i/expressions/face-icon-small-sad.gif" border="0">


One question for you, are you getting your daughter outside and getting her exercise. They are finding more and more people with CF that lack Vitamin D. My son has been like that since he was small. We need to give him Vitamin D supplements and are encouraging exercise.
 
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