Worried

kitomd21

New member
Andrea -
Our CF doctor can merely give us suggestions. He suggests no pets if there is a history of asthma or allergies, he suggests no carpeting because he can't come to our house to see if it's kept clean/old/do we have a good vacuum/etc....he suggests no drapes because he has no knowledge if they're dusty....all he can do is assume the worst of what we may have and suggest the opposite. Does that make sense? Essentially, he has no way of knowing how clean we keep the house and has to suggest what may be best if we aren't able to maintain that cleanliness. I hope that makes sense!! At any rate, he also hasn't suggested the use of a nebulizer...we only do CPT and albuterol at present. He's more of the philosophy that introducing anything other than albuterol is too much for an infant's tiny airways and he doesn't want to cause more damage/irritation than necessary at this point. He stresses a good central air (if you have it) filter and no dark or damp places in the home.

I, too, worry that we're not doing enough...I do know that our CF docs attend the annual CF conference and are supposedly up-to-date with the latest treatments...but I see so much variety on this site...better to gather those differences and ask your doc....
 

kitomd21

New member
Andrea -
Our CF doctor can merely give us suggestions. He suggests no pets if there is a history of asthma or allergies, he suggests no carpeting because he can't come to our house to see if it's kept clean/old/do we have a good vacuum/etc....he suggests no drapes because he has no knowledge if they're dusty....all he can do is assume the worst of what we may have and suggest the opposite. Does that make sense? Essentially, he has no way of knowing how clean we keep the house and has to suggest what may be best if we aren't able to maintain that cleanliness. I hope that makes sense!! At any rate, he also hasn't suggested the use of a nebulizer...we only do CPT and albuterol at present. He's more of the philosophy that introducing anything other than albuterol is too much for an infant's tiny airways and he doesn't want to cause more damage/irritation than necessary at this point. He stresses a good central air (if you have it) filter and no dark or damp places in the home.

I, too, worry that we're not doing enough...I do know that our CF docs attend the annual CF conference and are supposedly up-to-date with the latest treatments...but I see so much variety on this site...better to gather those differences and ask your doc....
 

kitomd21

New member
Andrea -
Our CF doctor can merely give us suggestions. He suggests no pets if there is a history of asthma or allergies, he suggests no carpeting because he can't come to our house to see if it's kept clean/old/do we have a good vacuum/etc....he suggests no drapes because he has no knowledge if they're dusty....all he can do is assume the worst of what we may have and suggest the opposite. Does that make sense? Essentially, he has no way of knowing how clean we keep the house and has to suggest what may be best if we aren't able to maintain that cleanliness. I hope that makes sense!! At any rate, he also hasn't suggested the use of a nebulizer...we only do CPT and albuterol at present. He's more of the philosophy that introducing anything other than albuterol is too much for an infant's tiny airways and he doesn't want to cause more damage/irritation than necessary at this point. He stresses a good central air (if you have it) filter and no dark or damp places in the home.

I, too, worry that we're not doing enough...I do know that our CF docs attend the annual CF conference and are supposedly up-to-date with the latest treatments...but I see so much variety on this site...better to gather those differences and ask your doc....
 

kitomd21

New member
Andrea -
Our CF doctor can merely give us suggestions. He suggests no pets if there is a history of asthma or allergies, he suggests no carpeting because he can't come to our house to see if it's kept clean/old/do we have a good vacuum/etc....he suggests no drapes because he has no knowledge if they're dusty....all he can do is assume the worst of what we may have and suggest the opposite. Does that make sense? Essentially, he has no way of knowing how clean we keep the house and has to suggest what may be best if we aren't able to maintain that cleanliness. I hope that makes sense!! At any rate, he also hasn't suggested the use of a nebulizer...we only do CPT and albuterol at present. He's more of the philosophy that introducing anything other than albuterol is too much for an infant's tiny airways and he doesn't want to cause more damage/irritation than necessary at this point. He stresses a good central air (if you have it) filter and no dark or damp places in the home.

I, too, worry that we're not doing enough...I do know that our CF docs attend the annual CF conference and are supposedly up-to-date with the latest treatments...but I see so much variety on this site...better to gather those differences and ask your doc....
 

kitomd21

New member
Andrea -
<br />Our CF doctor can merely give us suggestions. He suggests no pets if there is a history of asthma or allergies, he suggests no carpeting because he can't come to our house to see if it's kept clean/old/do we have a good vacuum/etc....he suggests no drapes because he has no knowledge if they're dusty....all he can do is assume the worst of what we may have and suggest the opposite. Does that make sense? Essentially, he has no way of knowing how clean we keep the house and has to suggest what may be best if we aren't able to maintain that cleanliness. I hope that makes sense!! At any rate, he also hasn't suggested the use of a nebulizer...we only do CPT and albuterol at present. He's more of the philosophy that introducing anything other than albuterol is too much for an infant's tiny airways and he doesn't want to cause more damage/irritation than necessary at this point. He stresses a good central air (if you have it) filter and no dark or damp places in the home.
<br />
<br />I, too, worry that we're not doing enough...I do know that our CF docs attend the annual CF conference and are supposedly up-to-date with the latest treatments...but I see so much variety on this site...better to gather those differences and ask your doc....
 

grassisgreener

New member
My daughter is 5 and has had relatively no lung issues, her lungs have always looked normal on x-ray and ct scan, etc. She has not done any regular nebulizer treatments to date bc like Tammy said about one of her daughters, her doctor has given more reasons not to do them yet than reason to do them. That said, we are planning on starting pulmozyme next month as a preventative because the studies are showing it can be very helpful in maintaining lung function/health.

I also second the idea of connecting with Dr. Warwick. He is a wealth of CF knowledge, some consider him an expert. I got in touch with him and he was super! He put my mind at ease about my daughter not using nebulized medications yet because there were so many people here saying things that made me feel like I was being negligent by not having her do them. My daughter sees the head doctor of a large clinic and I trust her knowledge and judgement but parents here made me second guess her so I sought a second opinion from Dr. Warwick. I think he is a great person to get a second opinion from. For what it is worth, he did not suggest any changes in her treatment protocol.

About carpet, some people believe that air quality in a home with carpet is actually better than in a home with only hard floors because the carpet helps filter airborne particles...it just depends on who you talk to. We personally have some carpet in our home (probably 75% of it is carpet). We do not wear shoes inside the house and we vacuum with a hepafilter vacuum and we have a whole house air purifier attached to the hvac. I would do these things even if we didn't have someone with CF in our house though bc I like a clean house and it helps with my allergy/sinus trouble ALOT!

Definately keep asking about things, I think it is always good to look for better/new ways to help our kids but sometimes you have to accept that what you are already doing is the best for now! Keep up the good work!
 

grassisgreener

New member
My daughter is 5 and has had relatively no lung issues, her lungs have always looked normal on x-ray and ct scan, etc. She has not done any regular nebulizer treatments to date bc like Tammy said about one of her daughters, her doctor has given more reasons not to do them yet than reason to do them. That said, we are planning on starting pulmozyme next month as a preventative because the studies are showing it can be very helpful in maintaining lung function/health.

I also second the idea of connecting with Dr. Warwick. He is a wealth of CF knowledge, some consider him an expert. I got in touch with him and he was super! He put my mind at ease about my daughter not using nebulized medications yet because there were so many people here saying things that made me feel like I was being negligent by not having her do them. My daughter sees the head doctor of a large clinic and I trust her knowledge and judgement but parents here made me second guess her so I sought a second opinion from Dr. Warwick. I think he is a great person to get a second opinion from. For what it is worth, he did not suggest any changes in her treatment protocol.

About carpet, some people believe that air quality in a home with carpet is actually better than in a home with only hard floors because the carpet helps filter airborne particles...it just depends on who you talk to. We personally have some carpet in our home (probably 75% of it is carpet). We do not wear shoes inside the house and we vacuum with a hepafilter vacuum and we have a whole house air purifier attached to the hvac. I would do these things even if we didn't have someone with CF in our house though bc I like a clean house and it helps with my allergy/sinus trouble ALOT!

Definately keep asking about things, I think it is always good to look for better/new ways to help our kids but sometimes you have to accept that what you are already doing is the best for now! Keep up the good work!
 

grassisgreener

New member
My daughter is 5 and has had relatively no lung issues, her lungs have always looked normal on x-ray and ct scan, etc. She has not done any regular nebulizer treatments to date bc like Tammy said about one of her daughters, her doctor has given more reasons not to do them yet than reason to do them. That said, we are planning on starting pulmozyme next month as a preventative because the studies are showing it can be very helpful in maintaining lung function/health.

I also second the idea of connecting with Dr. Warwick. He is a wealth of CF knowledge, some consider him an expert. I got in touch with him and he was super! He put my mind at ease about my daughter not using nebulized medications yet because there were so many people here saying things that made me feel like I was being negligent by not having her do them. My daughter sees the head doctor of a large clinic and I trust her knowledge and judgement but parents here made me second guess her so I sought a second opinion from Dr. Warwick. I think he is a great person to get a second opinion from. For what it is worth, he did not suggest any changes in her treatment protocol.

About carpet, some people believe that air quality in a home with carpet is actually better than in a home with only hard floors because the carpet helps filter airborne particles...it just depends on who you talk to. We personally have some carpet in our home (probably 75% of it is carpet). We do not wear shoes inside the house and we vacuum with a hepafilter vacuum and we have a whole house air purifier attached to the hvac. I would do these things even if we didn't have someone with CF in our house though bc I like a clean house and it helps with my allergy/sinus trouble ALOT!

Definately keep asking about things, I think it is always good to look for better/new ways to help our kids but sometimes you have to accept that what you are already doing is the best for now! Keep up the good work!
 

grassisgreener

New member
My daughter is 5 and has had relatively no lung issues, her lungs have always looked normal on x-ray and ct scan, etc. She has not done any regular nebulizer treatments to date bc like Tammy said about one of her daughters, her doctor has given more reasons not to do them yet than reason to do them. That said, we are planning on starting pulmozyme next month as a preventative because the studies are showing it can be very helpful in maintaining lung function/health.

I also second the idea of connecting with Dr. Warwick. He is a wealth of CF knowledge, some consider him an expert. I got in touch with him and he was super! He put my mind at ease about my daughter not using nebulized medications yet because there were so many people here saying things that made me feel like I was being negligent by not having her do them. My daughter sees the head doctor of a large clinic and I trust her knowledge and judgement but parents here made me second guess her so I sought a second opinion from Dr. Warwick. I think he is a great person to get a second opinion from. For what it is worth, he did not suggest any changes in her treatment protocol.

About carpet, some people believe that air quality in a home with carpet is actually better than in a home with only hard floors because the carpet helps filter airborne particles...it just depends on who you talk to. We personally have some carpet in our home (probably 75% of it is carpet). We do not wear shoes inside the house and we vacuum with a hepafilter vacuum and we have a whole house air purifier attached to the hvac. I would do these things even if we didn't have someone with CF in our house though bc I like a clean house and it helps with my allergy/sinus trouble ALOT!

Definately keep asking about things, I think it is always good to look for better/new ways to help our kids but sometimes you have to accept that what you are already doing is the best for now! Keep up the good work!
 

grassisgreener

New member
My daughter is 5 and has had relatively no lung issues, her lungs have always looked normal on x-ray and ct scan, etc. She has not done any regular nebulizer treatments to date bc like Tammy said about one of her daughters, her doctor has given more reasons not to do them yet than reason to do them. That said, we are planning on starting pulmozyme next month as a preventative because the studies are showing it can be very helpful in maintaining lung function/health.
<br />
<br />I also second the idea of connecting with Dr. Warwick. He is a wealth of CF knowledge, some consider him an expert. I got in touch with him and he was super! He put my mind at ease about my daughter not using nebulized medications yet because there were so many people here saying things that made me feel like I was being negligent by not having her do them. My daughter sees the head doctor of a large clinic and I trust her knowledge and judgement but parents here made me second guess her so I sought a second opinion from Dr. Warwick. I think he is a great person to get a second opinion from. For what it is worth, he did not suggest any changes in her treatment protocol.
<br />
<br />About carpet, some people believe that air quality in a home with carpet is actually better than in a home with only hard floors because the carpet helps filter airborne particles...it just depends on who you talk to. We personally have some carpet in our home (probably 75% of it is carpet). We do not wear shoes inside the house and we vacuum with a hepafilter vacuum and we have a whole house air purifier attached to the hvac. I would do these things even if we didn't have someone with CF in our house though bc I like a clean house and it helps with my allergy/sinus trouble ALOT!
<br />
<br />Definately keep asking about things, I think it is always good to look for better/new ways to help our kids but sometimes you have to accept that what you are already doing is the best for now! Keep up the good work!
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mrsp86</b></i>

going to look like a right no brains but whats the neb again</end quote></div>

Nebulizer
In medicine, a nebulizer is a device used to administer medication to people in the form of a mist inhaled into the lungs. It is commonly used in treating cystic fibrosis, asthma, and other respiratory diseases.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mrsp86</b></i>

going to look like a right no brains but whats the neb again</end quote></div>

Nebulizer
In medicine, a nebulizer is a device used to administer medication to people in the form of a mist inhaled into the lungs. It is commonly used in treating cystic fibrosis, asthma, and other respiratory diseases.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mrsp86</b></i>

going to look like a right no brains but whats the neb again</end quote></div>

Nebulizer
In medicine, a nebulizer is a device used to administer medication to people in the form of a mist inhaled into the lungs. It is commonly used in treating cystic fibrosis, asthma, and other respiratory diseases.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mrsp86</b></i>

going to look like a right no brains but whats the neb again</end quote>

Nebulizer
In medicine, a nebulizer is a device used to administer medication to people in the form of a mist inhaled into the lungs. It is commonly used in treating cystic fibrosis, asthma, and other respiratory diseases.
 

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>mrsp86</b></i>
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<br />going to look like a right no brains but whats the neb again</end quote>
<br />
<br />Nebulizer
<br />In medicine, a nebulizer is a device used to administer medication to people in the form of a mist inhaled into the lungs. It is commonly used in treating cystic fibrosis, asthma, and other respiratory diseases.
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