cultured our first PA

[Nightwriter]

Hi Testify to Love,

If your son first cultured PA and was given Tobi alone and he had an asthma component and/or mucus plugs, the Tobi cannot reach deep into the lung. The Cipro works by getting into the bloodstream the same as IV antibiotics. That's is why the studies cited above show no difference between IV meds and Tobi/Cipro.

I know you didn't ask, but with all the "colds" settling into your son's chest, it is possible he has an an asthma component, and is affected by allergies and irritants that cause inflammation that may then lead to constant infections. The allergy/iirritant issue also causes inflammation in the sinuses which is a major source of lung exacerbations too. When I addressed these issues, the cycle of infections stopped with just occasional flareups treated by Tobi and/or Cipro. May be worth checking out.

 

[Nightwriter]

Hi Testify to Love,

If your son first cultured PA and was given Tobi alone and he had an asthma component and/or mucus plugs, the Tobi cannot reach deep into the lung. The Cipro works by getting into the bloodstream the same as IV antibiotics. That's is why the studies cited above show no difference between IV meds and Tobi/Cipro.

I know you didn't ask, but with all the "colds" settling into your son's chest, it is possible he has an an asthma component, and is affected by allergies and irritants that cause inflammation that may then lead to constant infections. The allergy/iirritant issue also causes inflammation in the sinuses which is a major source of lung exacerbations too. When I addressed these issues, the cycle of infections stopped with just occasional flareups treated by Tobi and/or Cipro. May be worth checking out.

 

[Nightwriter]

Hi Testify to Love,

If your son first cultured PA and was given Tobi alone and he had an asthma component and/or mucus plugs, the Tobi cannot reach deep into the lung. The Cipro works by getting into the bloodstream the same as IV antibiotics. That's is why the studies cited above show no difference between IV meds and Tobi/Cipro.

I know you didn't ask, but with all the "colds" settling into your son's chest, it is possible he has an an asthma component, and is affected by allergies and irritants that cause inflammation that may then lead to constant infections. The allergy/iirritant issue also causes inflammation in the sinuses which is a major source of lung exacerbations too. When I addressed these issues, the cycle of infections stopped with just occasional flareups treated by Tobi and/or Cipro. May be worth checking out.

 

[Nightwriter]

Hi Testify to Love,

If your son first cultured PA and was given Tobi alone and he had an asthma component and/or mucus plugs, the Tobi cannot reach deep into the lung. The Cipro works by getting into the bloodstream the same as IV antibiotics. That's is why the studies cited above show no difference between IV meds and Tobi/Cipro.

I know you didn't ask, but with all the "colds" settling into your son's chest, it is possible he has an an asthma component, and is affected by allergies and irritants that cause inflammation that may then lead to constant infections. The allergy/iirritant issue also causes inflammation in the sinuses which is a major source of lung exacerbations too. When I addressed these issues, the cycle of infections stopped with just occasional flareups treated by Tobi and/or Cipro. May be worth checking out.

 

[Nightwriter]

Hi Testify to Love,
<br />
<br />If your son first cultured PA and was given Tobi alone and he had an asthma component and/or mucus plugs, the Tobi cannot reach deep into the lung. The Cipro works by getting into the bloodstream the same as IV antibiotics. That's is why the studies cited above show no difference between IV meds and Tobi/Cipro.
<br />
<br />I know you didn't ask, but with all the "colds" settling into your son's chest, it is possible he has an an asthma component, and is affected by allergies and irritants that cause inflammation that may then lead to constant infections. The allergy/iirritant issue also causes inflammation in the sinuses which is a major source of lung exacerbations too. When I addressed these issues, the cycle of infections stopped with just occasional flareups treated by Tobi and/or Cipro. May be worth checking out.

 

[TestifyToLove]

He does not have asthma. There is no wheezing and no retractions. There is also no evidence of environmental factors increasing his respiratory issues. He was actually treated as if he had asthma at his last CF center which was one of the first things the new CF center changed around.

It is very, very likely he had and has mucous plugs, however. He never recieved ACTs until 7 months ago. Birth home never did ACTs and fostermom reported that he wouldn't tolerate ACTs. She used oxygen prescribed for another child when he struggled to breath and she pumped him full of asthma meds to open his airways, but she never once attempted to help him clear anything OUT of his lungs.

He now gets vested twice a day for 30 minutes. And, if he starts a coughing spell, we use techniques to help him clear the stuff out of his lungs. He was taught for years to 'stop coughing' and now we teach him to cough HARD to move things out. Since he reports that he thinks he's going to puke after hard coughing fits now, I believe we are getting gunk worked out of there now. He always swallows, so we don't see the results of our efforts, but his lungs are getting better.

 

[TestifyToLove]

He does not have asthma. There is no wheezing and no retractions. There is also no evidence of environmental factors increasing his respiratory issues. He was actually treated as if he had asthma at his last CF center which was one of the first things the new CF center changed around.

It is very, very likely he had and has mucous plugs, however. He never recieved ACTs until 7 months ago. Birth home never did ACTs and fostermom reported that he wouldn't tolerate ACTs. She used oxygen prescribed for another child when he struggled to breath and she pumped him full of asthma meds to open his airways, but she never once attempted to help him clear anything OUT of his lungs.

He now gets vested twice a day for 30 minutes. And, if he starts a coughing spell, we use techniques to help him clear the stuff out of his lungs. He was taught for years to 'stop coughing' and now we teach him to cough HARD to move things out. Since he reports that he thinks he's going to puke after hard coughing fits now, I believe we are getting gunk worked out of there now. He always swallows, so we don't see the results of our efforts, but his lungs are getting better.

 

[TestifyToLove]

He does not have asthma. There is no wheezing and no retractions. There is also no evidence of environmental factors increasing his respiratory issues. He was actually treated as if he had asthma at his last CF center which was one of the first things the new CF center changed around.

It is very, very likely he had and has mucous plugs, however. He never recieved ACTs until 7 months ago. Birth home never did ACTs and fostermom reported that he wouldn't tolerate ACTs. She used oxygen prescribed for another child when he struggled to breath and she pumped him full of asthma meds to open his airways, but she never once attempted to help him clear anything OUT of his lungs.

He now gets vested twice a day for 30 minutes. And, if he starts a coughing spell, we use techniques to help him clear the stuff out of his lungs. He was taught for years to 'stop coughing' and now we teach him to cough HARD to move things out. Since he reports that he thinks he's going to puke after hard coughing fits now, I believe we are getting gunk worked out of there now. He always swallows, so we don't see the results of our efforts, but his lungs are getting better.

 

[TestifyToLove]

He does not have asthma. There is no wheezing and no retractions. There is also no evidence of environmental factors increasing his respiratory issues. He was actually treated as if he had asthma at his last CF center which was one of the first things the new CF center changed around.

It is very, very likely he had and has mucous plugs, however. He never recieved ACTs until 7 months ago. Birth home never did ACTs and fostermom reported that he wouldn't tolerate ACTs. She used oxygen prescribed for another child when he struggled to breath and she pumped him full of asthma meds to open his airways, but she never once attempted to help him clear anything OUT of his lungs.

He now gets vested twice a day for 30 minutes. And, if he starts a coughing spell, we use techniques to help him clear the stuff out of his lungs. He was taught for years to 'stop coughing' and now we teach him to cough HARD to move things out. Since he reports that he thinks he's going to puke after hard coughing fits now, I believe we are getting gunk worked out of there now. He always swallows, so we don't see the results of our efforts, but his lungs are getting better.

 

[TestifyToLove]

He does not have asthma. There is no wheezing and no retractions. There is also no evidence of environmental factors increasing his respiratory issues. He was actually treated as if he had asthma at his last CF center which was one of the first things the new CF center changed around.
<br />
<br />It is very, very likely he had and has mucous plugs, however. He never recieved ACTs until 7 months ago. Birth home never did ACTs and fostermom reported that he wouldn't tolerate ACTs. She used oxygen prescribed for another child when he struggled to breath and she pumped him full of asthma meds to open his airways, but she never once attempted to help him clear anything OUT of his lungs.
<br />
<br />He now gets vested twice a day for 30 minutes. And, if he starts a coughing spell, we use techniques to help him clear the stuff out of his lungs. He was taught for years to 'stop coughing' and now we teach him to cough HARD to move things out. Since he reports that he thinks he's going to puke after hard coughing fits now, I believe we are getting gunk worked out of there now. He always swallows, so we don't see the results of our efforts, but his lungs are getting better.

 

[Nightwriter]

Don't mean to overstep my bounds here because you know your child best. But I was never treated for asthma, no doctor evr mentioned asthma and I just got worse and worse. I do not wheeze, I do not have have retractions, and I no longer even have a chronic cough. But boy do I have asthma. I test negative on almost all allergy tests but I am chemically sensitive which I was never aware of. I just thought I got exacerbations out of the blue or after "colds".

I am passing on only one doctor's opinion of course, but my doctor believes if someone is on Asthma medicines such as bronchodilators and/or inhaled steroids, it it asthma.

Ultimately you have to do what you feel is best for your child. I am just sharing my own personal experience. It cetainly may not apply in your case. And I don't mean to impose my views.

 

[Nightwriter]

Don't mean to overstep my bounds here because you know your child best. But I was never treated for asthma, no doctor evr mentioned asthma and I just got worse and worse. I do not wheeze, I do not have have retractions, and I no longer even have a chronic cough. But boy do I have asthma. I test negative on almost all allergy tests but I am chemically sensitive which I was never aware of. I just thought I got exacerbations out of the blue or after "colds".

I am passing on only one doctor's opinion of course, but my doctor believes if someone is on Asthma medicines such as bronchodilators and/or inhaled steroids, it it asthma.

Ultimately you have to do what you feel is best for your child. I am just sharing my own personal experience. It cetainly may not apply in your case. And I don't mean to impose my views.

 

[Nightwriter]

Don't mean to overstep my bounds here because you know your child best. But I was never treated for asthma, no doctor evr mentioned asthma and I just got worse and worse. I do not wheeze, I do not have have retractions, and I no longer even have a chronic cough. But boy do I have asthma. I test negative on almost all allergy tests but I am chemically sensitive which I was never aware of. I just thought I got exacerbations out of the blue or after "colds".

I am passing on only one doctor's opinion of course, but my doctor believes if someone is on Asthma medicines such as bronchodilators and/or inhaled steroids, it it asthma.

Ultimately you have to do what you feel is best for your child. I am just sharing my own personal experience. It cetainly may not apply in your case. And I don't mean to impose my views.

 

[Nightwriter]

Don't mean to overstep my bounds here because you know your child best. But I was never treated for asthma, no doctor evr mentioned asthma and I just got worse and worse. I do not wheeze, I do not have have retractions, and I no longer even have a chronic cough. But boy do I have asthma. I test negative on almost all allergy tests but I am chemically sensitive which I was never aware of. I just thought I got exacerbations out of the blue or after "colds".

I am passing on only one doctor's opinion of course, but my doctor believes if someone is on Asthma medicines such as bronchodilators and/or inhaled steroids, it it asthma.

Ultimately you have to do what you feel is best for your child. I am just sharing my own personal experience. It cetainly may not apply in your case. And I don't mean to impose my views.

 

[Nightwriter]

Don't mean to overstep my bounds here because you know your child best. But I was never treated for asthma, no doctor evr mentioned asthma and I just got worse and worse. I do not wheeze, I do not have have retractions, and I no longer even have a chronic cough. But boy do I have asthma. I test negative on almost all allergy tests but I am chemically sensitive which I was never aware of. I just thought I got exacerbations out of the blue or after "colds".
<br />
<br />I am passing on only one doctor's opinion of course, but my doctor believes if someone is on Asthma medicines such as bronchodilators and/or inhaled steroids, it it asthma.
<br />
<br />Ultimately you have to do what you feel is best for your child. I am just sharing my own personal experience. It cetainly may not apply in your case. And I don't mean to impose my views.

 

[TestifyToLove]

I have a brother with asthma so severe he has nearly died of it. I'm well familiar with asthma and the differences between asthma and CF. M displays NONE of the symptoms of asthma, not one, including environmental allergies. He has a significant overgrowth of PA from a lack of treatment for several years since he first cultured it. Currently, when he contracts a cold, the PA grows into a bacterial infection again and is requiring antibiotics. This is confirmed by cultures. All testing at this point does NOT indicate airway restriction going on. Otherwise he does not experience breathing difficulties except when the PA is growing over yet again. Again, confirmed by cultures.

We have managed to kill the MSSA in his lungs, but still cannot get the PA under control.

As I said, there very well may be mucous issues going on. But, this is not asthma. He was never diagnosed with asthma. He has never shown symptoms of asthma. He was put on asthma meds and treated by a fostermom who never bothered to learn what CF was so she treated his CF as if he was asthma. His breathing issues became SIGNIFICANTLY better when we brought him home and began aggressively treating him for CF instead of asthma.

 

[TestifyToLove]

I have a brother with asthma so severe he has nearly died of it. I'm well familiar with asthma and the differences between asthma and CF. M displays NONE of the symptoms of asthma, not one, including environmental allergies. He has a significant overgrowth of PA from a lack of treatment for several years since he first cultured it. Currently, when he contracts a cold, the PA grows into a bacterial infection again and is requiring antibiotics. This is confirmed by cultures. All testing at this point does NOT indicate airway restriction going on. Otherwise he does not experience breathing difficulties except when the PA is growing over yet again. Again, confirmed by cultures.

We have managed to kill the MSSA in his lungs, but still cannot get the PA under control.

As I said, there very well may be mucous issues going on. But, this is not asthma. He was never diagnosed with asthma. He has never shown symptoms of asthma. He was put on asthma meds and treated by a fostermom who never bothered to learn what CF was so she treated his CF as if he was asthma. His breathing issues became SIGNIFICANTLY better when we brought him home and began aggressively treating him for CF instead of asthma.

 

[TestifyToLove]

I have a brother with asthma so severe he has nearly died of it. I'm well familiar with asthma and the differences between asthma and CF. M displays NONE of the symptoms of asthma, not one, including environmental allergies. He has a significant overgrowth of PA from a lack of treatment for several years since he first cultured it. Currently, when he contracts a cold, the PA grows into a bacterial infection again and is requiring antibiotics. This is confirmed by cultures. All testing at this point does NOT indicate airway restriction going on. Otherwise he does not experience breathing difficulties except when the PA is growing over yet again. Again, confirmed by cultures.

We have managed to kill the MSSA in his lungs, but still cannot get the PA under control.

As I said, there very well may be mucous issues going on. But, this is not asthma. He was never diagnosed with asthma. He has never shown symptoms of asthma. He was put on asthma meds and treated by a fostermom who never bothered to learn what CF was so she treated his CF as if he was asthma. His breathing issues became SIGNIFICANTLY better when we brought him home and began aggressively treating him for CF instead of asthma.

 

[TestifyToLove]

I have a brother with asthma so severe he has nearly died of it. I'm well familiar with asthma and the differences between asthma and CF. M displays NONE of the symptoms of asthma, not one, including environmental allergies. He has a significant overgrowth of PA from a lack of treatment for several years since he first cultured it. Currently, when he contracts a cold, the PA grows into a bacterial infection again and is requiring antibiotics. This is confirmed by cultures. All testing at this point does NOT indicate airway restriction going on. Otherwise he does not experience breathing difficulties except when the PA is growing over yet again. Again, confirmed by cultures.

We have managed to kill the MSSA in his lungs, but still cannot get the PA under control.

As I said, there very well may be mucous issues going on. But, this is not asthma. He was never diagnosed with asthma. He has never shown symptoms of asthma. He was put on asthma meds and treated by a fostermom who never bothered to learn what CF was so she treated his CF as if he was asthma. His breathing issues became SIGNIFICANTLY better when we brought him home and began aggressively treating him for CF instead of asthma.

 

[TestifyToLove]

I have a brother with asthma so severe he has nearly died of it. I'm well familiar with asthma and the differences between asthma and CF. M displays NONE of the symptoms of asthma, not one, including environmental allergies. He has a significant overgrowth of PA from a lack of treatment for several years since he first cultured it. Currently, when he contracts a cold, the PA grows into a bacterial infection again and is requiring antibiotics. This is confirmed by cultures. All testing at this point does NOT indicate airway restriction going on. Otherwise he does not experience breathing difficulties except when the PA is growing over yet again. Again, confirmed by cultures.
<br />
<br />We have managed to kill the MSSA in his lungs, but still cannot get the PA under control.
<br />
<br />As I said, there very well may be mucous issues going on. But, this is not asthma. He was never diagnosed with asthma. He has never shown symptoms of asthma. He was put on asthma meds and treated by a fostermom who never bothered to learn what CF was so she treated his CF as if he was asthma. His breathing issues became SIGNIFICANTLY better when we brought him home and began aggressively treating him for CF instead of asthma.