Airway Clearance troubles

[folione]

My 4 year old w/CF is taking albuterol, flovent, pulmicort, pulmozyme and colistin twice a day (just once for pulmozyme) and spending 40 minutes with the vest and does his best to huff and cough during it. He also did a round of IVs back in July, but over the past 4 months his CF doc says his lungs are sounding like there is more mucus and that it is moving less. Cipro and Orapred are being added to the routine today.

He's cultured Pseudomonas off and on, most recently in March 2007 so there's some suspicion that it's lurking beyond the grasp of the cultures, hence the ongoing antibiotics. We keep him active and also do a bit of manual CPT whenever we get a chance, but he's just not getting that stuff to move.

But my question is this: can anyone tell me similar experiences with kids who just don't seem to generate productive coughing/airway clearance at this age and whether anything has been effective that my boy may not have tried?

 

[folione]

My 4 year old w/CF is taking albuterol, flovent, pulmicort, pulmozyme and colistin twice a day (just once for pulmozyme) and spending 40 minutes with the vest and does his best to huff and cough during it. He also did a round of IVs back in July, but over the past 4 months his CF doc says his lungs are sounding like there is more mucus and that it is moving less. Cipro and Orapred are being added to the routine today.

He's cultured Pseudomonas off and on, most recently in March 2007 so there's some suspicion that it's lurking beyond the grasp of the cultures, hence the ongoing antibiotics. We keep him active and also do a bit of manual CPT whenever we get a chance, but he's just not getting that stuff to move.

But my question is this: can anyone tell me similar experiences with kids who just don't seem to generate productive coughing/airway clearance at this age and whether anything has been effective that my boy may not have tried?

 

[folione]

My 4 year old w/CF is taking albuterol, flovent, pulmicort, pulmozyme and colistin twice a day (just once for pulmozyme) and spending 40 minutes with the vest and does his best to huff and cough during it. He also did a round of IVs back in July, but over the past 4 months his CF doc says his lungs are sounding like there is more mucus and that it is moving less. Cipro and Orapred are being added to the routine today.

He's cultured Pseudomonas off and on, most recently in March 2007 so there's some suspicion that it's lurking beyond the grasp of the cultures, hence the ongoing antibiotics. We keep him active and also do a bit of manual CPT whenever we get a chance, but he's just not getting that stuff to move.

But my question is this: can anyone tell me similar experiences with kids who just don't seem to generate productive coughing/airway clearance at this age and whether anything has been effective that my boy may not have tried?

 

[folione]

My 4 year old w/CF is taking albuterol, flovent, pulmicort, pulmozyme and colistin twice a day (just once for pulmozyme) and spending 40 minutes with the vest and does his best to huff and cough during it. He also did a round of IVs back in July, but over the past 4 months his CF doc says his lungs are sounding like there is more mucus and that it is moving less. Cipro and Orapred are being added to the routine today.

He's cultured Pseudomonas off and on, most recently in March 2007 so there's some suspicion that it's lurking beyond the grasp of the cultures, hence the ongoing antibiotics. We keep him active and also do a bit of manual CPT whenever we get a chance, but he's just not getting that stuff to move.

But my question is this: can anyone tell me similar experiences with kids who just don't seem to generate productive coughing/airway clearance at this age and whether anything has been effective that my boy may not have tried?

 

[folione]

My 4 year old w/CF is taking albuterol, flovent, pulmicort, pulmozyme and colistin twice a day (just once for pulmozyme) and spending 40 minutes with the vest and does his best to huff and cough during it. He also did a round of IVs back in July, but over the past 4 months his CF doc says his lungs are sounding like there is more mucus and that it is moving less. Cipro and Orapred are being added to the routine today.

He's cultured Pseudomonas off and on, most recently in March 2007 so there's some suspicion that it's lurking beyond the grasp of the cultures, hence the ongoing antibiotics. We keep him active and also do a bit of manual CPT whenever we get a chance, but he's just not getting that stuff to move.

But my question is this: can anyone tell me similar experiences with kids who just don't seem to generate productive coughing/airway clearance at this age and whether anything has been effective that my boy may not have tried?

 

[Rebjane]

One thing that I can think of is Hypertonic Saline. Unfortunately, it is a twice a day neb and you are already doing lots of nebs. But the purpose of the HTS is to liquify the mucous in the lungs so that the CF'er can cough it up, and the VEST can bang it out. Some CF'ers can not tolerate the HTS because it can cause wheezing (doing albuterol neb 15 min prior to HTS can help with this). Some CF docs don't want to presrcibe it for the young CF'ers who are unable to do PFT"S. My daughter who is 4 1/2 started HTS in March, so far so good. Something worth asking about.

Also, the other thing may be another round of IV's to knock down the bacteria, that 's what I can think of. Hope your little guy feels better soon.

 

[Rebjane]

One thing that I can think of is Hypertonic Saline. Unfortunately, it is a twice a day neb and you are already doing lots of nebs. But the purpose of the HTS is to liquify the mucous in the lungs so that the CF'er can cough it up, and the VEST can bang it out. Some CF'ers can not tolerate the HTS because it can cause wheezing (doing albuterol neb 15 min prior to HTS can help with this). Some CF docs don't want to presrcibe it for the young CF'ers who are unable to do PFT"S. My daughter who is 4 1/2 started HTS in March, so far so good. Something worth asking about.

Also, the other thing may be another round of IV's to knock down the bacteria, that 's what I can think of. Hope your little guy feels better soon.

 

[Rebjane]

One thing that I can think of is Hypertonic Saline. Unfortunately, it is a twice a day neb and you are already doing lots of nebs. But the purpose of the HTS is to liquify the mucous in the lungs so that the CF'er can cough it up, and the VEST can bang it out. Some CF'ers can not tolerate the HTS because it can cause wheezing (doing albuterol neb 15 min prior to HTS can help with this). Some CF docs don't want to presrcibe it for the young CF'ers who are unable to do PFT"S. My daughter who is 4 1/2 started HTS in March, so far so good. Something worth asking about.

Also, the other thing may be another round of IV's to knock down the bacteria, that 's what I can think of. Hope your little guy feels better soon.

 

[Rebjane]

One thing that I can think of is Hypertonic Saline. Unfortunately, it is a twice a day neb and you are already doing lots of nebs. But the purpose of the HTS is to liquify the mucous in the lungs so that the CF'er can cough it up, and the VEST can bang it out. Some CF'ers can not tolerate the HTS because it can cause wheezing (doing albuterol neb 15 min prior to HTS can help with this). Some CF docs don't want to presrcibe it for the young CF'ers who are unable to do PFT"S. My daughter who is 4 1/2 started HTS in March, so far so good. Something worth asking about.

Also, the other thing may be another round of IV's to knock down the bacteria, that 's what I can think of. Hope your little guy feels better soon.

 

[Rebjane]

One thing that I can think of is Hypertonic Saline. Unfortunately, it is a twice a day neb and you are already doing lots of nebs. But the purpose of the HTS is to liquify the mucous in the lungs so that the CF'er can cough it up, and the VEST can bang it out. Some CF'ers can not tolerate the HTS because it can cause wheezing (doing albuterol neb 15 min prior to HTS can help with this). Some CF docs don't want to presrcibe it for the young CF'ers who are unable to do PFT"S. My daughter who is 4 1/2 started HTS in March, so far so good. Something worth asking about.

Also, the other thing may be another round of IV's to knock down the bacteria, that 's what I can think of. Hope your little guy feels better soon.

 

[Foody]

One thing I feel from our research that gets overlooked is gut health. Often when there is an imbalance in the gut the lungs and sinuses suffer. A huge part of immune function takes place in the gut. So if it is inflammed or harboring bacteria (ie candida overgrowth from oral antibiotic usage) lung function will be affected. If there are hidden food allergies irritating the gut and causing the immune system to over-react, the lungs will respond with additional mucus putting them at risk for bacteria overgrowth.

Often, by helping the gut function more efficiently and supporting them with anti-inflammatory foods (pineapple, flax seeds, omega 3 oils, sea salt and much more), supplements, and probiotics you can see a change in "junkiness." A daily probiotic may help if you are not taking any, checking out food allergies, changing diet to include more anti-inflammatory foods (some good books on the topic), and adding supplements (DHA, tumeric, extra C, magnesium, to name a few good ones) which help cool down the inflammatory response.

Glutathione (GSH) is one of the best supplements we have found, one I would not do without. Some people are comfortable with inhaling it and others just use it orally. It is worth researching it IMO. We inhale 2x daily and take oral 2x daily and he has done well with just this so far.

If that is not something you would try, you may want to try Mucomist and research Dr. Warwicks approach to airway clearance to bounce off your own doctors. Try Amy's (Sakasuka) Blog which details alot of his ideas on airway clearance. He has the longest life expectancy and considered one of the best CF doctors around. I think he is wonderful because he encourages you to experiment with what helps your childs CF expression.

Chiropractic or cranial sacral manipulation can also help with moving mucus out of the lungs.

I have many articles and studies on the site listed below. Please feel free to PM me with questions if you would like.

 

[Foody]

One thing I feel from our research that gets overlooked is gut health. Often when there is an imbalance in the gut the lungs and sinuses suffer. A huge part of immune function takes place in the gut. So if it is inflammed or harboring bacteria (ie candida overgrowth from oral antibiotic usage) lung function will be affected. If there are hidden food allergies irritating the gut and causing the immune system to over-react, the lungs will respond with additional mucus putting them at risk for bacteria overgrowth.

Often, by helping the gut function more efficiently and supporting them with anti-inflammatory foods (pineapple, flax seeds, omega 3 oils, sea salt and much more), supplements, and probiotics you can see a change in "junkiness." A daily probiotic may help if you are not taking any, checking out food allergies, changing diet to include more anti-inflammatory foods (some good books on the topic), and adding supplements (DHA, tumeric, extra C, magnesium, to name a few good ones) which help cool down the inflammatory response.

Glutathione (GSH) is one of the best supplements we have found, one I would not do without. Some people are comfortable with inhaling it and others just use it orally. It is worth researching it IMO. We inhale 2x daily and take oral 2x daily and he has done well with just this so far.

If that is not something you would try, you may want to try Mucomist and research Dr. Warwicks approach to airway clearance to bounce off your own doctors. Try Amy's (Sakasuka) Blog which details alot of his ideas on airway clearance. He has the longest life expectancy and considered one of the best CF doctors around. I think he is wonderful because he encourages you to experiment with what helps your childs CF expression.

Chiropractic or cranial sacral manipulation can also help with moving mucus out of the lungs.

I have many articles and studies on the site listed below. Please feel free to PM me with questions if you would like.

 

[Foody]

One thing I feel from our research that gets overlooked is gut health. Often when there is an imbalance in the gut the lungs and sinuses suffer. A huge part of immune function takes place in the gut. So if it is inflammed or harboring bacteria (ie candida overgrowth from oral antibiotic usage) lung function will be affected. If there are hidden food allergies irritating the gut and causing the immune system to over-react, the lungs will respond with additional mucus putting them at risk for bacteria overgrowth.

Often, by helping the gut function more efficiently and supporting them with anti-inflammatory foods (pineapple, flax seeds, omega 3 oils, sea salt and much more), supplements, and probiotics you can see a change in "junkiness." A daily probiotic may help if you are not taking any, checking out food allergies, changing diet to include more anti-inflammatory foods (some good books on the topic), and adding supplements (DHA, tumeric, extra C, magnesium, to name a few good ones) which help cool down the inflammatory response.

Glutathione (GSH) is one of the best supplements we have found, one I would not do without. Some people are comfortable with inhaling it and others just use it orally. It is worth researching it IMO. We inhale 2x daily and take oral 2x daily and he has done well with just this so far.

If that is not something you would try, you may want to try Mucomist and research Dr. Warwicks approach to airway clearance to bounce off your own doctors. Try Amy's (Sakasuka) Blog which details alot of his ideas on airway clearance. He has the longest life expectancy and considered one of the best CF doctors around. I think he is wonderful because he encourages you to experiment with what helps your childs CF expression.

Chiropractic or cranial sacral manipulation can also help with moving mucus out of the lungs.

I have many articles and studies on the site listed below. Please feel free to PM me with questions if you would like.

 

[Foody]

One thing I feel from our research that gets overlooked is gut health. Often when there is an imbalance in the gut the lungs and sinuses suffer. A huge part of immune function takes place in the gut. So if it is inflammed or harboring bacteria (ie candida overgrowth from oral antibiotic usage) lung function will be affected. If there are hidden food allergies irritating the gut and causing the immune system to over-react, the lungs will respond with additional mucus putting them at risk for bacteria overgrowth.

Often, by helping the gut function more efficiently and supporting them with anti-inflammatory foods (pineapple, flax seeds, omega 3 oils, sea salt and much more), supplements, and probiotics you can see a change in "junkiness." A daily probiotic may help if you are not taking any, checking out food allergies, changing diet to include more anti-inflammatory foods (some good books on the topic), and adding supplements (DHA, tumeric, extra C, magnesium, to name a few good ones) which help cool down the inflammatory response.

Glutathione (GSH) is one of the best supplements we have found, one I would not do without. Some people are comfortable with inhaling it and others just use it orally. It is worth researching it IMO. We inhale 2x daily and take oral 2x daily and he has done well with just this so far.

If that is not something you would try, you may want to try Mucomist and research Dr. Warwicks approach to airway clearance to bounce off your own doctors. Try Amy's (Sakasuka) Blog which details alot of his ideas on airway clearance. He has the longest life expectancy and considered one of the best CF doctors around. I think he is wonderful because he encourages you to experiment with what helps your childs CF expression.

Chiropractic or cranial sacral manipulation can also help with moving mucus out of the lungs.

I have many articles and studies on the site listed below. Please feel free to PM me with questions if you would like.

 

[Foody]

One thing I feel from our research that gets overlooked is gut health. Often when there is an imbalance in the gut the lungs and sinuses suffer. A huge part of immune function takes place in the gut. So if it is inflammed or harboring bacteria (ie candida overgrowth from oral antibiotic usage) lung function will be affected. If there are hidden food allergies irritating the gut and causing the immune system to over-react, the lungs will respond with additional mucus putting them at risk for bacteria overgrowth.

Often, by helping the gut function more efficiently and supporting them with anti-inflammatory foods (pineapple, flax seeds, omega 3 oils, sea salt and much more), supplements, and probiotics you can see a change in "junkiness." A daily probiotic may help if you are not taking any, checking out food allergies, changing diet to include more anti-inflammatory foods (some good books on the topic), and adding supplements (DHA, tumeric, extra C, magnesium, to name a few good ones) which help cool down the inflammatory response.

Glutathione (GSH) is one of the best supplements we have found, one I would not do without. Some people are comfortable with inhaling it and others just use it orally. It is worth researching it IMO. We inhale 2x daily and take oral 2x daily and he has done well with just this so far.

If that is not something you would try, you may want to try Mucomist and research Dr. Warwicks approach to airway clearance to bounce off your own doctors. Try Amy's (Sakasuka) Blog which details alot of his ideas on airway clearance. He has the longest life expectancy and considered one of the best CF doctors around. I think he is wonderful because he encourages you to experiment with what helps your childs CF expression.

Chiropractic or cranial sacral manipulation can also help with moving mucus out of the lungs.

I have many articles and studies on the site listed below. Please feel free to PM me with questions if you would like.

 

[sweetwhite30]

I have some experience with this at the presence.They put isaiah on pulmozyme 2 times a day now and added orapred for 2 months and a round of omnicef due to he had sinus smells.... He is required after the vest now to do 20 jumping jacking and i will say this it has made a huge difference for him .. you might want to consider asking the doctor to put him on pulmozyme 2 times a day and just have him do jumping jacks right after the vest treatment to move the stuff more productively through the lungs and out of them...

 

[sweetwhite30]

I have some experience with this at the presence.They put isaiah on pulmozyme 2 times a day now and added orapred for 2 months and a round of omnicef due to he had sinus smells.... He is required after the vest now to do 20 jumping jacking and i will say this it has made a huge difference for him .. you might want to consider asking the doctor to put him on pulmozyme 2 times a day and just have him do jumping jacks right after the vest treatment to move the stuff more productively through the lungs and out of them...

 

[sweetwhite30]

I have some experience with this at the presence.They put isaiah on pulmozyme 2 times a day now and added orapred for 2 months and a round of omnicef due to he had sinus smells.... He is required after the vest now to do 20 jumping jacking and i will say this it has made a huge difference for him .. you might want to consider asking the doctor to put him on pulmozyme 2 times a day and just have him do jumping jacks right after the vest treatment to move the stuff more productively through the lungs and out of them...

 

[sweetwhite30]

I have some experience with this at the presence.They put isaiah on pulmozyme 2 times a day now and added orapred for 2 months and a round of omnicef due to he had sinus smells.... He is required after the vest now to do 20 jumping jacking and i will say this it has made a huge difference for him .. you might want to consider asking the doctor to put him on pulmozyme 2 times a day and just have him do jumping jacks right after the vest treatment to move the stuff more productively through the lungs and out of them...

 

[sweetwhite30]

I have some experience with this at the presence.They put isaiah on pulmozyme 2 times a day now and added orapred for 2 months and a round of omnicef due to he had sinus smells.... He is required after the vest now to do 20 jumping jacking and i will say this it has made a huge difference for him .. you might want to consider asking the doctor to put him on pulmozyme 2 times a day and just have him do jumping jacks right after the vest treatment to move the stuff more productively through the lungs and out of them...