cultured our first PA

[tammykrumrey]

I was in your shoes two years ago, and felt strongly that Hannah should be treated with IV meds for her first PA culture. I completely freaked out.

Hannah was in the EPIC study for several years prior to culturing the PA. And I decided to stay with it even after the culture, a decision that I was very nervous with at the time. Within the study, she fell into Tobi and Cipro (could be a placebo-don't know yet) only when positive cultures (instead of others who were on Tobi and Cipro every other month). In making my decision, I asked her doctor if this is what he would prescribe if she was not in the study and he said yes. Her PA was non-muciod and sensitive to both antibiotics.

She stayed on Tobi and Cipro for two rounds, and she was negative for PA cultures for a year. Then she went on it for one round, and has been clear for over a year this time.

I have heard others try IVs to only get the same results. According to our daughters CF doctor, there are a lot of studies that show that oral Cipro in combination with inhaled Tobi does just as good as IVs. I didn't ask to see these studies because I trust him. (He is the department head of Pulm. and is VERY much hands on in labs and studies. He travels across the country speaking at conferences. I only say this as to why I trust him...if our pediatrician would tell me this, I would be like let me see the proof!)

By the way, I am sure that Hannah was on the Placebo, not the real Cipro b/c last time she cultured PA, over a year ago, she was on the Tobi and 'Cipro' for almost two weeks with not much improvment (she had been couging a lot). So her Dr. stopped the 'Cipro' that was sent to me for the study, and prescribed what he KNEW was Cipro, and she got better within a few days.

Good luck with everything. I know how difficult these things are. I would definatley find out if it is muciod or non-muciod. That would had made a difference in my decision on going with the treatment we did for Hannah.

 

[tammykrumrey]

I was in your shoes two years ago, and felt strongly that Hannah should be treated with IV meds for her first PA culture. I completely freaked out.

Hannah was in the EPIC study for several years prior to culturing the PA. And I decided to stay with it even after the culture, a decision that I was very nervous with at the time. Within the study, she fell into Tobi and Cipro (could be a placebo-don't know yet) only when positive cultures (instead of others who were on Tobi and Cipro every other month). In making my decision, I asked her doctor if this is what he would prescribe if she was not in the study and he said yes. Her PA was non-muciod and sensitive to both antibiotics.

She stayed on Tobi and Cipro for two rounds, and she was negative for PA cultures for a year. Then she went on it for one round, and has been clear for over a year this time.

I have heard others try IVs to only get the same results. According to our daughters CF doctor, there are a lot of studies that show that oral Cipro in combination with inhaled Tobi does just as good as IVs. I didn't ask to see these studies because I trust him. (He is the department head of Pulm. and is VERY much hands on in labs and studies. He travels across the country speaking at conferences. I only say this as to why I trust him...if our pediatrician would tell me this, I would be like let me see the proof!)

By the way, I am sure that Hannah was on the Placebo, not the real Cipro b/c last time she cultured PA, over a year ago, she was on the Tobi and 'Cipro' for almost two weeks with not much improvment (she had been couging a lot). So her Dr. stopped the 'Cipro' that was sent to me for the study, and prescribed what he KNEW was Cipro, and she got better within a few days.

Good luck with everything. I know how difficult these things are. I would definatley find out if it is muciod or non-muciod. That would had made a difference in my decision on going with the treatment we did for Hannah.

 

[tammykrumrey]

I was in your shoes two years ago, and felt strongly that Hannah should be treated with IV meds for her first PA culture. I completely freaked out.

Hannah was in the EPIC study for several years prior to culturing the PA. And I decided to stay with it even after the culture, a decision that I was very nervous with at the time. Within the study, she fell into Tobi and Cipro (could be a placebo-don't know yet) only when positive cultures (instead of others who were on Tobi and Cipro every other month). In making my decision, I asked her doctor if this is what he would prescribe if she was not in the study and he said yes. Her PA was non-muciod and sensitive to both antibiotics.

She stayed on Tobi and Cipro for two rounds, and she was negative for PA cultures for a year. Then she went on it for one round, and has been clear for over a year this time.

I have heard others try IVs to only get the same results. According to our daughters CF doctor, there are a lot of studies that show that oral Cipro in combination with inhaled Tobi does just as good as IVs. I didn't ask to see these studies because I trust him. (He is the department head of Pulm. and is VERY much hands on in labs and studies. He travels across the country speaking at conferences. I only say this as to why I trust him...if our pediatrician would tell me this, I would be like let me see the proof!)

By the way, I am sure that Hannah was on the Placebo, not the real Cipro b/c last time she cultured PA, over a year ago, she was on the Tobi and 'Cipro' for almost two weeks with not much improvment (she had been couging a lot). So her Dr. stopped the 'Cipro' that was sent to me for the study, and prescribed what he KNEW was Cipro, and she got better within a few days.

Good luck with everything. I know how difficult these things are. I would definatley find out if it is muciod or non-muciod. That would had made a difference in my decision on going with the treatment we did for Hannah.

 

[tammykrumrey]

I was in your shoes two years ago, and felt strongly that Hannah should be treated with IV meds for her first PA culture. I completely freaked out.

Hannah was in the EPIC study for several years prior to culturing the PA. And I decided to stay with it even after the culture, a decision that I was very nervous with at the time. Within the study, she fell into Tobi and Cipro (could be a placebo-don't know yet) only when positive cultures (instead of others who were on Tobi and Cipro every other month). In making my decision, I asked her doctor if this is what he would prescribe if she was not in the study and he said yes. Her PA was non-muciod and sensitive to both antibiotics.

She stayed on Tobi and Cipro for two rounds, and she was negative for PA cultures for a year. Then she went on it for one round, and has been clear for over a year this time.

I have heard others try IVs to only get the same results. According to our daughters CF doctor, there are a lot of studies that show that oral Cipro in combination with inhaled Tobi does just as good as IVs. I didn't ask to see these studies because I trust him. (He is the department head of Pulm. and is VERY much hands on in labs and studies. He travels across the country speaking at conferences. I only say this as to why I trust him...if our pediatrician would tell me this, I would be like let me see the proof!)

By the way, I am sure that Hannah was on the Placebo, not the real Cipro b/c last time she cultured PA, over a year ago, she was on the Tobi and 'Cipro' for almost two weeks with not much improvment (she had been couging a lot). So her Dr. stopped the 'Cipro' that was sent to me for the study, and prescribed what he KNEW was Cipro, and she got better within a few days.

Good luck with everything. I know how difficult these things are. I would definatley find out if it is muciod or non-muciod. That would had made a difference in my decision on going with the treatment we did for Hannah.

 

[tammykrumrey]

I was in your shoes two years ago, and felt strongly that Hannah should be treated with IV meds for her first PA culture. I completely freaked out.
<br />
<br />Hannah was in the EPIC study for several years prior to culturing the PA. And I decided to stay with it even after the culture, a decision that I was very nervous with at the time. Within the study, she fell into Tobi and Cipro (could be a placebo-don't know yet) only when positive cultures (instead of others who were on Tobi and Cipro every other month). In making my decision, I asked her doctor if this is what he would prescribe if she was not in the study and he said yes. Her PA was non-muciod and sensitive to both antibiotics.
<br />
<br />She stayed on Tobi and Cipro for two rounds, and she was negative for PA cultures for a year. Then she went on it for one round, and has been clear for over a year this time.
<br />
<br />I have heard others try IVs to only get the same results. According to our daughters CF doctor, there are a lot of studies that show that oral Cipro in combination with inhaled Tobi does just as good as IVs. I didn't ask to see these studies because I trust him. (He is the department head of Pulm. and is VERY much hands on in labs and studies. He travels across the country speaking at conferences. I only say this as to why I trust him...if our pediatrician would tell me this, I would be like let me see the proof!)
<br />
<br />By the way, I am sure that Hannah was on the Placebo, not the real Cipro b/c last time she cultured PA, over a year ago, she was on the Tobi and 'Cipro' for almost two weeks with not much improvment (she had been couging a lot). So her Dr. stopped the 'Cipro' that was sent to me for the study, and prescribed what he KNEW was Cipro, and she got better within a few days.
<br />
<br />Good luck with everything. I know how difficult these things are. I would definatley find out if it is muciod or non-muciod. That would had made a difference in my decision on going with the treatment we did for Hannah.

 

[grassisgreener]

I think there is a mixed opinion on this. I know my daughter's doctor feels that the results from TOBI & Cipro are just as or more effective than IV's. There has been an ongoing study called EPIC (Early Pseudomonas Infection Control) that has been following treatment with TOBI & Cipro and it seems as though the results are very good (I haven't been able to find any info on the results, only what daughter's doctor has said). I do know that IV's = hospital stay which addds a risk in itself. Cipro is a very strong antibiotic and the TOBI is as well. I personally would use this combo if my daughter cultured it again. I know it is all really scary though bc there is no guarentee either way.

For what it is worth, my daughter cultured PA in August & September of 2004, did one round of TOBI & Cipro followed by TOBI 28 on & 28 off until she had 6 months of clear cultures. She hasn't cultured it since and has never done any IV antibiotics.

Whichever route you take, I hope he is able to get rid of it!

 

[grassisgreener]

I think there is a mixed opinion on this. I know my daughter's doctor feels that the results from TOBI & Cipro are just as or more effective than IV's. There has been an ongoing study called EPIC (Early Pseudomonas Infection Control) that has been following treatment with TOBI & Cipro and it seems as though the results are very good (I haven't been able to find any info on the results, only what daughter's doctor has said). I do know that IV's = hospital stay which addds a risk in itself. Cipro is a very strong antibiotic and the TOBI is as well. I personally would use this combo if my daughter cultured it again. I know it is all really scary though bc there is no guarentee either way.

For what it is worth, my daughter cultured PA in August & September of 2004, did one round of TOBI & Cipro followed by TOBI 28 on & 28 off until she had 6 months of clear cultures. She hasn't cultured it since and has never done any IV antibiotics.

Whichever route you take, I hope he is able to get rid of it!

 

[grassisgreener]

I think there is a mixed opinion on this. I know my daughter's doctor feels that the results from TOBI & Cipro are just as or more effective than IV's. There has been an ongoing study called EPIC (Early Pseudomonas Infection Control) that has been following treatment with TOBI & Cipro and it seems as though the results are very good (I haven't been able to find any info on the results, only what daughter's doctor has said). I do know that IV's = hospital stay which addds a risk in itself. Cipro is a very strong antibiotic and the TOBI is as well. I personally would use this combo if my daughter cultured it again. I know it is all really scary though bc there is no guarentee either way.

For what it is worth, my daughter cultured PA in August & September of 2004, did one round of TOBI & Cipro followed by TOBI 28 on & 28 off until she had 6 months of clear cultures. She hasn't cultured it since and has never done any IV antibiotics.

Whichever route you take, I hope he is able to get rid of it!

 

[grassisgreener]

I think there is a mixed opinion on this. I know my daughter's doctor feels that the results from TOBI & Cipro are just as or more effective than IV's. There has been an ongoing study called EPIC (Early Pseudomonas Infection Control) that has been following treatment with TOBI & Cipro and it seems as though the results are very good (I haven't been able to find any info on the results, only what daughter's doctor has said). I do know that IV's = hospital stay which addds a risk in itself. Cipro is a very strong antibiotic and the TOBI is as well. I personally would use this combo if my daughter cultured it again. I know it is all really scary though bc there is no guarentee either way.

For what it is worth, my daughter cultured PA in August & September of 2004, did one round of TOBI & Cipro followed by TOBI 28 on & 28 off until she had 6 months of clear cultures. She hasn't cultured it since and has never done any IV antibiotics.

Whichever route you take, I hope he is able to get rid of it!

 

[grassisgreener]

I think there is a mixed opinion on this. I know my daughter's doctor feels that the results from TOBI & Cipro are just as or more effective than IV's. There has been an ongoing study called EPIC (Early Pseudomonas Infection Control) that has been following treatment with TOBI & Cipro and it seems as though the results are very good (I haven't been able to find any info on the results, only what daughter's doctor has said). I do know that IV's = hospital stay which addds a risk in itself. Cipro is a very strong antibiotic and the TOBI is as well. I personally would use this combo if my daughter cultured it again. I know it is all really scary though bc there is no guarentee either way.
<br />
<br />For what it is worth, my daughter cultured PA in August & September of 2004, did one round of TOBI & Cipro followed by TOBI 28 on & 28 off until she had 6 months of clear cultures. She hasn't cultured it since and has never done any IV antibiotics.
<br />
<br />Whichever route you take, I hope he is able to get rid of it!

 

[Nightwriter]

If there is no statistical difference, I would not want I.V.s. And as mentioned above, if studies indicate that this is true, why put a kid through the discomfort of IV's, the negative toll these powerful drugs do to a body, and the higher risk of eventual hearing loss? Some people (other than docs) may recommend it because it SEEMS more aggressive. I am no expert, but as I understand it: Cipro goes directly into the bloodstream and can get past the biofilm that envelopes the PA bug so that it can effectively kill the Pseudomonas... the same thing that IV drugs do. And as described above, for those who used IV's, that in itself did not by any means stop the PA from returning.

In fact, in the 80's when Cipro came out, it was like a miracle drug because finally it meant you didn't have to go on IV's for a long time.

By inhaling Tobi, it goes directly into the lung also killing Pseudomonas. Sometimes the Tobi can't reach deep into the lungs if there are mucus plugs. So that's another reason, both Cipro and Tobi are prescribed together in addition to the theory that Pseudomonas is best treated by 2 drugs.

Also mentioned above, you want to stay away from hospitals. Period. For any reason. That's where CF'ers pick up bugs.

And as an aside, if you want to keep Pseudomonas from returning, treat the asthma component to CF, meaning keeping inflammation down, airways open, mucus out of the lungs, so that the bacteria doesn't sit in the lung waiting to wreak havoc.

 

[Nightwriter]

If there is no statistical difference, I would not want I.V.s. And as mentioned above, if studies indicate that this is true, why put a kid through the discomfort of IV's, the negative toll these powerful drugs do to a body, and the higher risk of eventual hearing loss? Some people (other than docs) may recommend it because it SEEMS more aggressive. I am no expert, but as I understand it: Cipro goes directly into the bloodstream and can get past the biofilm that envelopes the PA bug so that it can effectively kill the Pseudomonas... the same thing that IV drugs do. And as described above, for those who used IV's, that in itself did not by any means stop the PA from returning.

In fact, in the 80's when Cipro came out, it was like a miracle drug because finally it meant you didn't have to go on IV's for a long time.

By inhaling Tobi, it goes directly into the lung also killing Pseudomonas. Sometimes the Tobi can't reach deep into the lungs if there are mucus plugs. So that's another reason, both Cipro and Tobi are prescribed together in addition to the theory that Pseudomonas is best treated by 2 drugs.

Also mentioned above, you want to stay away from hospitals. Period. For any reason. That's where CF'ers pick up bugs.

And as an aside, if you want to keep Pseudomonas from returning, treat the asthma component to CF, meaning keeping inflammation down, airways open, mucus out of the lungs, so that the bacteria doesn't sit in the lung waiting to wreak havoc.

 

[Nightwriter]

If there is no statistical difference, I would not want I.V.s. And as mentioned above, if studies indicate that this is true, why put a kid through the discomfort of IV's, the negative toll these powerful drugs do to a body, and the higher risk of eventual hearing loss? Some people (other than docs) may recommend it because it SEEMS more aggressive. I am no expert, but as I understand it: Cipro goes directly into the bloodstream and can get past the biofilm that envelopes the PA bug so that it can effectively kill the Pseudomonas... the same thing that IV drugs do. And as described above, for those who used IV's, that in itself did not by any means stop the PA from returning.

In fact, in the 80's when Cipro came out, it was like a miracle drug because finally it meant you didn't have to go on IV's for a long time.

By inhaling Tobi, it goes directly into the lung also killing Pseudomonas. Sometimes the Tobi can't reach deep into the lungs if there are mucus plugs. So that's another reason, both Cipro and Tobi are prescribed together in addition to the theory that Pseudomonas is best treated by 2 drugs.

Also mentioned above, you want to stay away from hospitals. Period. For any reason. That's where CF'ers pick up bugs.

And as an aside, if you want to keep Pseudomonas from returning, treat the asthma component to CF, meaning keeping inflammation down, airways open, mucus out of the lungs, so that the bacteria doesn't sit in the lung waiting to wreak havoc.

 

[Nightwriter]

If there is no statistical difference, I would not want I.V.s. And as mentioned above, if studies indicate that this is true, why put a kid through the discomfort of IV's, the negative toll these powerful drugs do to a body, and the higher risk of eventual hearing loss? Some people (other than docs) may recommend it because it SEEMS more aggressive. I am no expert, but as I understand it: Cipro goes directly into the bloodstream and can get past the biofilm that envelopes the PA bug so that it can effectively kill the Pseudomonas... the same thing that IV drugs do. And as described above, for those who used IV's, that in itself did not by any means stop the PA from returning.

In fact, in the 80's when Cipro came out, it was like a miracle drug because finally it meant you didn't have to go on IV's for a long time.

By inhaling Tobi, it goes directly into the lung also killing Pseudomonas. Sometimes the Tobi can't reach deep into the lungs if there are mucus plugs. So that's another reason, both Cipro and Tobi are prescribed together in addition to the theory that Pseudomonas is best treated by 2 drugs.

Also mentioned above, you want to stay away from hospitals. Period. For any reason. That's where CF'ers pick up bugs.

And as an aside, if you want to keep Pseudomonas from returning, treat the asthma component to CF, meaning keeping inflammation down, airways open, mucus out of the lungs, so that the bacteria doesn't sit in the lung waiting to wreak havoc.

 

[Nightwriter]

If there is no statistical difference, I would not want I.V.s. And as mentioned above, if studies indicate that this is true, why put a kid through the discomfort of IV's, the negative toll these powerful drugs do to a body, and the higher risk of eventual hearing loss? Some people (other than docs) may recommend it because it SEEMS more aggressive. I am no expert, but as I understand it: Cipro goes directly into the bloodstream and can get past the biofilm that envelopes the PA bug so that it can effectively kill the Pseudomonas... the same thing that IV drugs do. And as described above, for those who used IV's, that in itself did not by any means stop the PA from returning.
<br />
<br />In fact, in the 80's when Cipro came out, it was like a miracle drug because finally it meant you didn't have to go on IV's for a long time.
<br />
<br />By inhaling Tobi, it goes directly into the lung also killing Pseudomonas. Sometimes the Tobi can't reach deep into the lungs if there are mucus plugs. So that's another reason, both Cipro and Tobi are prescribed together in addition to the theory that Pseudomonas is best treated by 2 drugs.
<br />
<br />Also mentioned above, you want to stay away from hospitals. Period. For any reason. That's where CF'ers pick up bugs.
<br />
<br />And as an aside, if you want to keep Pseudomonas from returning, treat the asthma component to CF, meaning keeping inflammation down, airways open, mucus out of the lungs, so that the bacteria doesn't sit in the lung waiting to wreak havoc.

 

[sdelorenzo]

I REALLY wanted to do IV's when my son cultured pseudomonas for the first time too. He was 12 months old. I just could not convince his dr of it. His dr said tobi and cipro was equally effective, especially in young children. Since then my son has cultured it I think four times in four years, all a year apart, even going two years PA free. He has sinus surgery a few months ago and it was in his sinuses. So I think he has got to colonized.

The easy way is Tobi and cipro. IV's are not easy. Hopefully your child's dr will listen to your request.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I REALLY wanted to do IV's when my son cultured pseudomonas for the first time too. He was 12 months old. I just could not convince his dr of it. His dr said tobi and cipro was equally effective, especially in young children. Since then my son has cultured it I think four times in four years, all a year apart, even going two years PA free. He has sinus surgery a few months ago and it was in his sinuses. So I think he has got to colonized.

The easy way is Tobi and cipro. IV's are not easy. Hopefully your child's dr will listen to your request.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I REALLY wanted to do IV's when my son cultured pseudomonas for the first time too. He was 12 months old. I just could not convince his dr of it. His dr said tobi and cipro was equally effective, especially in young children. Since then my son has cultured it I think four times in four years, all a year apart, even going two years PA free. He has sinus surgery a few months ago and it was in his sinuses. So I think he has got to colonized.

The easy way is Tobi and cipro. IV's are not easy. Hopefully your child's dr will listen to your request.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I REALLY wanted to do IV's when my son cultured pseudomonas for the first time too. He was 12 months old. I just could not convince his dr of it. His dr said tobi and cipro was equally effective, especially in young children. Since then my son has cultured it I think four times in four years, all a year apart, even going two years PA free. He has sinus surgery a few months ago and it was in his sinuses. So I think he has got to colonized.

The easy way is Tobi and cipro. IV's are not easy. Hopefully your child's dr will listen to your request.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I REALLY wanted to do IV's when my son cultured pseudomonas for the first time too. He was 12 months old. I just could not convince his dr of it. His dr said tobi and cipro was equally effective, especially in young children. Since then my son has cultured it I think four times in four years, all a year apart, even going two years PA free. He has sinus surgery a few months ago and it was in his sinuses. So I think he has got to colonized.
<br />
<br />The easy way is Tobi and cipro. IV's are not easy. Hopefully your child's dr will listen to your request.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf