what are your experiance with tobi and cipro??

B

brewz2

Guest
My daughter is six now and cultured for psudamonas at four. she's been on and off tobi since then, but they never added cipro. She's been negative for a little over a year now.

I do have a son that is two now with CF. What I wanted to pass along to you was something our nurse mentioned to us when we first got to our new clinic (we moved out of state) She said that if my son cultures for psudamonas (since it's so contagious between CF patients) that they may do intravenous Tobi with him b/c it would be his first culture with psudamonas and that they treat it aggressively with the first culture. I think she mentioned that they do that overseas and they have a better rate of it not recurring, or something like that. Forgive my memory on the whole thing, but it has been two years since we had the conversation with her. My son has yet to culture psudamonas. If it's a first time culture, maybe check with your clinic and ask them.

I know they told me that it was too late for my daughter to do b/c she had alread had two or three cultures of psudamonas and was being treated for it with inhaled TOBI.

tracey, mom to Sydney (6) and Seth (2) both with two copies of DF508
 
B

brewz2

Guest
My daughter is six now and cultured for psudamonas at four. she's been on and off tobi since then, but they never added cipro. She's been negative for a little over a year now.

I do have a son that is two now with CF. What I wanted to pass along to you was something our nurse mentioned to us when we first got to our new clinic (we moved out of state) She said that if my son cultures for psudamonas (since it's so contagious between CF patients) that they may do intravenous Tobi with him b/c it would be his first culture with psudamonas and that they treat it aggressively with the first culture. I think she mentioned that they do that overseas and they have a better rate of it not recurring, or something like that. Forgive my memory on the whole thing, but it has been two years since we had the conversation with her. My son has yet to culture psudamonas. If it's a first time culture, maybe check with your clinic and ask them.

I know they told me that it was too late for my daughter to do b/c she had alread had two or three cultures of psudamonas and was being treated for it with inhaled TOBI.

tracey, mom to Sydney (6) and Seth (2) both with two copies of DF508
 
B

brewz2

Guest
My daughter is six now and cultured for psudamonas at four. she's been on and off tobi since then, but they never added cipro. She's been negative for a little over a year now.

I do have a son that is two now with CF. What I wanted to pass along to you was something our nurse mentioned to us when we first got to our new clinic (we moved out of state) She said that if my son cultures for psudamonas (since it's so contagious between CF patients) that they may do intravenous Tobi with him b/c it would be his first culture with psudamonas and that they treat it aggressively with the first culture. I think she mentioned that they do that overseas and they have a better rate of it not recurring, or something like that. Forgive my memory on the whole thing, but it has been two years since we had the conversation with her. My son has yet to culture psudamonas. If it's a first time culture, maybe check with your clinic and ask them.

I know they told me that it was too late for my daughter to do b/c she had alread had two or three cultures of psudamonas and was being treated for it with inhaled TOBI.

tracey, mom to Sydney (6) and Seth (2) both with two copies of DF508
 
B

brewz2

Guest
My daughter is six now and cultured for psudamonas at four. she's been on and off tobi since then, but they never added cipro. She's been negative for a little over a year now.

I do have a son that is two now with CF. What I wanted to pass along to you was something our nurse mentioned to us when we first got to our new clinic (we moved out of state) She said that if my son cultures for psudamonas (since it's so contagious between CF patients) that they may do intravenous Tobi with him b/c it would be his first culture with psudamonas and that they treat it aggressively with the first culture. I think she mentioned that they do that overseas and they have a better rate of it not recurring, or something like that. Forgive my memory on the whole thing, but it has been two years since we had the conversation with her. My son has yet to culture psudamonas. If it's a first time culture, maybe check with your clinic and ask them.

I know they told me that it was too late for my daughter to do b/c she had alread had two or three cultures of psudamonas and was being treated for it with inhaled TOBI.

tracey, mom to Sydney (6) and Seth (2) both with two copies of DF508
 
B

brewz2

Guest
My daughter is six now and cultured for psudamonas at four. she's been on and off tobi since then, but they never added cipro. She's been negative for a little over a year now.

I do have a son that is two now with CF. What I wanted to pass along to you was something our nurse mentioned to us when we first got to our new clinic (we moved out of state) She said that if my son cultures for psudamonas (since it's so contagious between CF patients) that they may do intravenous Tobi with him b/c it would be his first culture with psudamonas and that they treat it aggressively with the first culture. I think she mentioned that they do that overseas and they have a better rate of it not recurring, or something like that. Forgive my memory on the whole thing, but it has been two years since we had the conversation with her. My son has yet to culture psudamonas. If it's a first time culture, maybe check with your clinic and ask them.

I know they told me that it was too late for my daughter to do b/c she had alread had two or three cultures of psudamonas and was being treated for it with inhaled TOBI.

tracey, mom to Sydney (6) and Seth (2) both with two copies of DF508
 
E

erinjenkins

New member
My son is almost 4 and just cultured for PA this past week. I understand how Liza feels with getting down. Everytime he gets put on a new med I cry. I hate the constant reminders. But these little ones are so resiliant! It doesn't even bother him. I haven;t seen any side effects from this yet because we just started yesterday. How long does the tobi usually take in the neb? It seems to take our about 30 min. We just ordered a new med cup and filter. So maybe that will help.
 
E

erinjenkins

New member
My son is almost 4 and just cultured for PA this past week. I understand how Liza feels with getting down. Everytime he gets put on a new med I cry. I hate the constant reminders. But these little ones are so resiliant! It doesn't even bother him. I haven;t seen any side effects from this yet because we just started yesterday. How long does the tobi usually take in the neb? It seems to take our about 30 min. We just ordered a new med cup and filter. So maybe that will help.
 
E

erinjenkins

New member
My son is almost 4 and just cultured for PA this past week. I understand how Liza feels with getting down. Everytime he gets put on a new med I cry. I hate the constant reminders. But these little ones are so resiliant! It doesn't even bother him. I haven;t seen any side effects from this yet because we just started yesterday. How long does the tobi usually take in the neb? It seems to take our about 30 min. We just ordered a new med cup and filter. So maybe that will help.
 
E

erinjenkins

New member
My son is almost 4 and just cultured for PA this past week. I understand how Liza feels with getting down. Everytime he gets put on a new med I cry. I hate the constant reminders. But these little ones are so resiliant! It doesn't even bother him. I haven;t seen any side effects from this yet because we just started yesterday. How long does the tobi usually take in the neb? It seems to take our about 30 min. We just ordered a new med cup and filter. So maybe that will help.
 
E

erinjenkins

New member
My son is almost 4 and just cultured for PA this past week. I understand how Liza feels with getting down. Everytime he gets put on a new med I cry. I hate the constant reminders. But these little ones are so resiliant! It doesn't even bother him. I haven;t seen any side effects from this yet because we just started yesterday. How long does the tobi usually take in the neb? It seems to take our about 30 min. We just ordered a new med cup and filter. So maybe that will help.
 
R

Ratatosk

Administrator
Staff member
For us it takes about 23-25 minutes using the devilbiss pulmoaid compressor and 25-30 using the Pari Proneb Ultra II. Usually stop when it starts to sputter.

In the mornings after I do CPT on DS, I run take a shower and get ready while DH snuggles down in our bed and gives him his tobi. At night, things get a little long. He does nebs and 30 minutes of the vest and then has his tobi. He doesn't mind 'cuz it means he gets to play xbox longer -- we only let him play video games during vest time. So after preschool and before bedtime.
 
R

Ratatosk

Administrator
Staff member
For us it takes about 23-25 minutes using the devilbiss pulmoaid compressor and 25-30 using the Pari Proneb Ultra II. Usually stop when it starts to sputter.

In the mornings after I do CPT on DS, I run take a shower and get ready while DH snuggles down in our bed and gives him his tobi. At night, things get a little long. He does nebs and 30 minutes of the vest and then has his tobi. He doesn't mind 'cuz it means he gets to play xbox longer -- we only let him play video games during vest time. So after preschool and before bedtime.
 
R

Ratatosk

Administrator
Staff member
For us it takes about 23-25 minutes using the devilbiss pulmoaid compressor and 25-30 using the Pari Proneb Ultra II. Usually stop when it starts to sputter.

In the mornings after I do CPT on DS, I run take a shower and get ready while DH snuggles down in our bed and gives him his tobi. At night, things get a little long. He does nebs and 30 minutes of the vest and then has his tobi. He doesn't mind 'cuz it means he gets to play xbox longer -- we only let him play video games during vest time. So after preschool and before bedtime.
 
R

Ratatosk

Administrator
Staff member
For us it takes about 23-25 minutes using the devilbiss pulmoaid compressor and 25-30 using the Pari Proneb Ultra II. Usually stop when it starts to sputter.

In the mornings after I do CPT on DS, I run take a shower and get ready while DH snuggles down in our bed and gives him his tobi. At night, things get a little long. He does nebs and 30 minutes of the vest and then has his tobi. He doesn't mind 'cuz it means he gets to play xbox longer -- we only let him play video games during vest time. So after preschool and before bedtime.
 
R

Ratatosk

Administrator
Staff member
For us it takes about 23-25 minutes using the devilbiss pulmoaid compressor and 25-30 using the Pari Proneb Ultra II. Usually stop when it starts to sputter.

In the mornings after I do CPT on DS, I run take a shower and get ready while DH snuggles down in our bed and gives him his tobi. At night, things get a little long. He does nebs and 30 minutes of the vest and then has his tobi. He doesn't mind 'cuz it means he gets to play xbox longer -- we only let him play video games during vest time. So after preschool and before bedtime.
 
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