my son was just diagnosed and hospitalized

[bkc3]

Hello, this is my first post. 3 weeks ago my son was diagnosed. He fought a chronic cough and pneumonia. He was diagnosed when his pneumonia returned the 2nd time only 2 weeks after it started to clear. He is 3 years old and the best brightest thing in our life. I cannot imagine this world without him, nor do I want to. We understand the importance of his regimen to his long term health. He uses the vest (Hill-Rom 105) 4x daily for 10 minutes per session. he takes pulmicort/ albuterol 2x daily, pulmozyme 1x, albuterol alone 2x (or more). He is also on enzymes, zantac, and multivitamins. His nebulizer seems to take an abnormally long time (40 minutes for albuterol). He needs a mask, not ready for the pipe yet. What are some recommendations for products to make sure his meds are delivered more quickly and properly? The unit we have was provied by the hospital, it is an imagination compressor not sure of the brand.

Thank you for your future support, we are going to need it!
He is active and seemingly healthy at the moment. His belly is still dissented which is of some concern, any ideas on that?

 

[bkc3]

Hello, this is my first post. 3 weeks ago my son was diagnosed. He fought a chronic cough and pneumonia. He was diagnosed when his pneumonia returned the 2nd time only 2 weeks after it started to clear. He is 3 years old and the best brightest thing in our life. I cannot imagine this world without him, nor do I want to. We understand the importance of his regimen to his long term health. He uses the vest (Hill-Rom 105) 4x daily for 10 minutes per session. he takes pulmicort/ albuterol 2x daily, pulmozyme 1x, albuterol alone 2x (or more). He is also on enzymes, zantac, and multivitamins. His nebulizer seems to take an abnormally long time (40 minutes for albuterol). He needs a mask, not ready for the pipe yet. What are some recommendations for products to make sure his meds are delivered more quickly and properly? The unit we have was provied by the hospital, it is an imagination compressor not sure of the brand.

Thank you for your future support, we are going to need it!
He is active and seemingly healthy at the moment. His belly is still dissented which is of some concern, any ideas on that?

 

[bkc3]

Hello, this is my first post. 3 weeks ago my son was diagnosed. He fought a chronic cough and pneumonia. He was diagnosed when his pneumonia returned the 2nd time only 2 weeks after it started to clear. He is 3 years old and the best brightest thing in our life. I cannot imagine this world without him, nor do I want to. We understand the importance of his regimen to his long term health. He uses the vest (Hill-Rom 105) 4x daily for 10 minutes per session. he takes pulmicort/ albuterol 2x daily, pulmozyme 1x, albuterol alone 2x (or more). He is also on enzymes, zantac, and multivitamins. His nebulizer seems to take an abnormally long time (40 minutes for albuterol). He needs a mask, not ready for the pipe yet. What are some recommendations for products to make sure his meds are delivered more quickly and properly? The unit we have was provied by the hospital, it is an imagination compressor not sure of the brand.

Thank you for your future support, we are going to need it!
He is active and seemingly healthy at the moment. His belly is still dissented which is of some concern, any ideas on that?

 

[bkc3]

Hello, this is my first post. 3 weeks ago my son was diagnosed. He fought a chronic cough and pneumonia. He was diagnosed when his pneumonia returned the 2nd time only 2 weeks after it started to clear. He is 3 years old and the best brightest thing in our life. I cannot imagine this world without him, nor do I want to. We understand the importance of his regimen to his long term health. He uses the vest (Hill-Rom 105) 4x daily for 10 minutes per session. he takes pulmicort/ albuterol 2x daily, pulmozyme 1x, albuterol alone 2x (or more). He is also on enzymes, zantac, and multivitamins. His nebulizer seems to take an abnormally long time (40 minutes for albuterol). He needs a mask, not ready for the pipe yet. What are some recommendations for products to make sure his meds are delivered more quickly and properly? The unit we have was provied by the hospital, it is an imagination compressor not sure of the brand.

Thank you for your future support, we are going to need it!
He is active and seemingly healthy at the moment. His belly is still dissented which is of some concern, any ideas on that?

 

[bkc3]

Hello, this is my first post. 3 weeks ago my son was diagnosed. He fought a chronic cough and pneumonia. He was diagnosed when his pneumonia returned the 2nd time only 2 weeks after it started to clear. He is 3 years old and the best brightest thing in our life. I cannot imagine this world without him, nor do I want to. We understand the importance of his regimen to his long term health. He uses the vest (Hill-Rom 105) 4x daily for 10 minutes per session. he takes pulmicort/ albuterol 2x daily, pulmozyme 1x, albuterol alone 2x (or more). He is also on enzymes, zantac, and multivitamins. His nebulizer seems to take an abnormally long time (40 minutes for albuterol). He needs a mask, not ready for the pipe yet. What are some recommendations for products to make sure his meds are delivered more quickly and properly? The unit we have was provied by the hospital, it is an imagination compressor not sure of the brand.
<br />
<br />Thank you for your future support, we are going to need it!
<br />He is active and seemingly healthy at the moment. His belly is still dissented which is of some concern, any ideas on that?

 

[sdelorenzo]

Welcome. Sorry to hear about the diagnosis. But hopefully now the treatments will help him. The CF Foundation recommends the PulmoAide compressor. Click <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/LungHealth/WhichNebulizer/WhichNebulizerForWhichDrug.pdf">here</a> for the link. Also, my kids use the spacer for the albuterol. It is an aerosol that takes about 10 seconds to give the albuterol.
However, if there are a lot of problems with coughing and mucus, then the compressor with albuterol can help more than the spacer. Just curious as to why he is doing the vest for 10 minutes each time. The inventor of the vest, Dr. Warwick, recommends to use it for 30 minutes twice a day. I have heard of others with a dissented belly. I am pretty sure it has to do with malabsorption. Hopefully that will improve with the use of enzymes. Is your son also seeing a pediatric GI dr? Maybe they can help you address that concern.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Welcome. Sorry to hear about the diagnosis. But hopefully now the treatments will help him. The CF Foundation recommends the PulmoAide compressor. Click <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/LungHealth/WhichNebulizer/WhichNebulizerForWhichDrug.pdf">here</a> for the link. Also, my kids use the spacer for the albuterol. It is an aerosol that takes about 10 seconds to give the albuterol.
However, if there are a lot of problems with coughing and mucus, then the compressor with albuterol can help more than the spacer. Just curious as to why he is doing the vest for 10 minutes each time. The inventor of the vest, Dr. Warwick, recommends to use it for 30 minutes twice a day. I have heard of others with a dissented belly. I am pretty sure it has to do with malabsorption. Hopefully that will improve with the use of enzymes. Is your son also seeing a pediatric GI dr? Maybe they can help you address that concern.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Welcome. Sorry to hear about the diagnosis. But hopefully now the treatments will help him. The CF Foundation recommends the PulmoAide compressor. Click <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/LungHealth/WhichNebulizer/WhichNebulizerForWhichDrug.pdf">here</a> for the link. Also, my kids use the spacer for the albuterol. It is an aerosol that takes about 10 seconds to give the albuterol.
However, if there are a lot of problems with coughing and mucus, then the compressor with albuterol can help more than the spacer. Just curious as to why he is doing the vest for 10 minutes each time. The inventor of the vest, Dr. Warwick, recommends to use it for 30 minutes twice a day. I have heard of others with a dissented belly. I am pretty sure it has to do with malabsorption. Hopefully that will improve with the use of enzymes. Is your son also seeing a pediatric GI dr? Maybe they can help you address that concern.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Welcome. Sorry to hear about the diagnosis. But hopefully now the treatments will help him. The CF Foundation recommends the PulmoAide compressor. Click <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/LungHealth/WhichNebulizer/WhichNebulizerForWhichDrug.pdf">here</a> for the link. Also, my kids use the spacer for the albuterol. It is an aerosol that takes about 10 seconds to give the albuterol.
However, if there are a lot of problems with coughing and mucus, then the compressor with albuterol can help more than the spacer. Just curious as to why he is doing the vest for 10 minutes each time. The inventor of the vest, Dr. Warwick, recommends to use it for 30 minutes twice a day. I have heard of others with a dissented belly. I am pretty sure it has to do with malabsorption. Hopefully that will improve with the use of enzymes. Is your son also seeing a pediatric GI dr? Maybe they can help you address that concern.
Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[sdelorenzo]

Welcome. Sorry to hear about the diagnosis. But hopefully now the treatments will help him. The CF Foundation recommends the PulmoAide compressor. Click <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/LungHealth/WhichNebulizer/WhichNebulizerForWhichDrug.pdf">here</a> for the link. Also, my kids use the spacer for the albuterol. It is an aerosol that takes about 10 seconds to give the albuterol.
<br />However, if there are a lot of problems with coughing and mucus, then the compressor with albuterol can help more than the spacer. Just curious as to why he is doing the vest for 10 minutes each time. The inventor of the vest, Dr. Warwick, recommends to use it for 30 minutes twice a day. I have heard of others with a dissented belly. I am pretty sure it has to do with malabsorption. Hopefully that will improve with the use of enzymes. Is your son also seeing a pediatric GI dr? Maybe they can help you address that concern.
<br />Sharon, mom of Sophia, 8 and Jack, 5 both with cf, Grant, 6 months no cf

 

[bkc3]

I will look into the PulmoAide. Also, great info on the spacer. I will ask about that as well.
The vest recommendation was for 10 minutes 4x daily. Maybe that was just to get him used to it. I will inquire about that as well. As for the belly, he saw a gi doc. They think he just will take some time to cycle things through, The enzymes improved stools immediately. Sorry for all the questions, we just don't want to re-invent the wheel and do our best to help our son live life to the fullest. Thanks for the support! I can see already there is a lot of strength to draw from in this community.

Brian

 

[bkc3]

I will look into the PulmoAide. Also, great info on the spacer. I will ask about that as well.
The vest recommendation was for 10 minutes 4x daily. Maybe that was just to get him used to it. I will inquire about that as well. As for the belly, he saw a gi doc. They think he just will take some time to cycle things through, The enzymes improved stools immediately. Sorry for all the questions, we just don't want to re-invent the wheel and do our best to help our son live life to the fullest. Thanks for the support! I can see already there is a lot of strength to draw from in this community.

Brian

 

[bkc3]

I will look into the PulmoAide. Also, great info on the spacer. I will ask about that as well.
The vest recommendation was for 10 minutes 4x daily. Maybe that was just to get him used to it. I will inquire about that as well. As for the belly, he saw a gi doc. They think he just will take some time to cycle things through, The enzymes improved stools immediately. Sorry for all the questions, we just don't want to re-invent the wheel and do our best to help our son live life to the fullest. Thanks for the support! I can see already there is a lot of strength to draw from in this community.

Brian

 

[bkc3]

I will look into the PulmoAide. Also, great info on the spacer. I will ask about that as well.
The vest recommendation was for 10 minutes 4x daily. Maybe that was just to get him used to it. I will inquire about that as well. As for the belly, he saw a gi doc. They think he just will take some time to cycle things through, The enzymes improved stools immediately. Sorry for all the questions, we just don't want to re-invent the wheel and do our best to help our son live life to the fullest. Thanks for the support! I can see already there is a lot of strength to draw from in this community.

Brian

 

[bkc3]

I will look into the PulmoAide. Also, great info on the spacer. I will ask about that as well.
<br />The vest recommendation was for 10 minutes 4x daily. Maybe that was just to get him used to it. I will inquire about that as well. As for the belly, he saw a gi doc. They think he just will take some time to cycle things through, The enzymes improved stools immediately. Sorry for all the questions, we just don't want to re-invent the wheel and do our best to help our son live life to the fullest. Thanks for the support! I can see already there is a lot of strength to draw from in this community.
<br />
<br />Brian

 

[JazzysMom]

Welcome!

I would think it will take some adjusting & cycling through of the enzymes also to control the belly. Giving that you see a difference already is a good sign.

As to the vest.....I know that things vary from clinic to clinic, but IMHO minimum of 20 minutes each setting would be beneficial. Now granted it might be to get him use to it.

One thing you need to remember is that all not all treatment & meds work for all CFers nor at the same level. Even the most standard of things need to be adjusted to meet ones personal needs.

Keep the ?? coming & good advocating for your son!

 

[JazzysMom]

Welcome!

I would think it will take some adjusting & cycling through of the enzymes also to control the belly. Giving that you see a difference already is a good sign.

As to the vest.....I know that things vary from clinic to clinic, but IMHO minimum of 20 minutes each setting would be beneficial. Now granted it might be to get him use to it.

One thing you need to remember is that all not all treatment & meds work for all CFers nor at the same level. Even the most standard of things need to be adjusted to meet ones personal needs.

Keep the ?? coming & good advocating for your son!

 

[JazzysMom]

Welcome!

I would think it will take some adjusting & cycling through of the enzymes also to control the belly. Giving that you see a difference already is a good sign.

As to the vest.....I know that things vary from clinic to clinic, but IMHO minimum of 20 minutes each setting would be beneficial. Now granted it might be to get him use to it.

One thing you need to remember is that all not all treatment & meds work for all CFers nor at the same level. Even the most standard of things need to be adjusted to meet ones personal needs.

Keep the ?? coming & good advocating for your son!

 

[JazzysMom]

Welcome!

I would think it will take some adjusting & cycling through of the enzymes also to control the belly. Giving that you see a difference already is a good sign.

As to the vest.....I know that things vary from clinic to clinic, but IMHO minimum of 20 minutes each setting would be beneficial. Now granted it might be to get him use to it.

One thing you need to remember is that all not all treatment & meds work for all CFers nor at the same level. Even the most standard of things need to be adjusted to meet ones personal needs.

Keep the ?? coming & good advocating for your son!

 

[JazzysMom]

Welcome!
<br />
<br />I would think it will take some adjusting & cycling through of the enzymes also to control the belly. Giving that you see a difference already is a good sign.
<br />
<br />As to the vest.....I know that things vary from clinic to clinic, but IMHO minimum of 20 minutes each setting would be beneficial. Now granted it might be to get him use to it.
<br />
<br />One thing you need to remember is that all not all treatment & meds work for all CFers nor at the same level. Even the most standard of things need to be adjusted to meet ones personal needs.
<br />
<br />Keep the ?? coming & good advocating for your son!