Worried

Nightwriter

New member
Hi Andrea,

While I can't address what medical treatments a baby should get (I just don't know), I would like to respond to your confusion about what you can do otherwise to protect your baby's lungs. I can tell you that every doctor, except my present one, never said a word about the asthma component of CF, allergies, irritants or the role that inflamation plays in this disease. Under my old doctors, my lung function steadily declined, hospitalizations increased --as I became resistant to almost every drug.

When my present doctor taught me how to take "protective measures" in my home and my life, everything reversed. I was able to get off constant antibiotics. Nowadays when I am exposed to things that raise inflamation, I get sick. So I know for a fact, that you too can do things that can make a difference in trying to preserve your baby's lungs.

I asked my doctor the other day, why most doctors do not address asthma. Why do they prescribe antibiotics for everything, and why don't they address the obvious -- the quality of the air a patient breathes especially at home . Why don't they suggest eating healthy food without dyes, chemicals, sulfites, etc. (things that trigger asthma)...and she said because it is NOT usually taught in medical school. Although certainly some allergists address these things, amazingly some do not.

The reason my doctor became interested in this area was because she had a son with all kinds of weird ailments, horrible allergies, a learning disability where she was told not to expect much from him. When she changed his environment, and he became healthy, his became able to concentrate (he's now a doctor), and she started treating her patients the same way.

What is so great is that you are asking this question BEFORE the baby has problems. Babies' immune systems are still developing so they are even more sensitive. For instance, if you were to expose your baby to barbeque smoke, for instance, the smokes's particulates can do real damage to immature lungs (not good for anyone really). The same would go for carpet. If it were new carpet -- imagine "new carpet smell." All those fumes, adhesives, would go right into the baby's lungs. Old carpet has pollen, dander, mold, chemicals, dirt -- not to mention that the baby is going to be crawling on it, face right into it.

So what happens is, the more exposures, the lungs get more and more inflamed which causes airways to swell and constrict (asthma) more mucus builds up and gets trapped making it harder to get out. Then infections start.

Another example: If you clean with harsh chemicals or vacuum near the baby with a vacuum that kicks our dust -- that all irritates the baby's lungs. So if possible a HEPA vacuum and a good air filter really would make a difference.

CF patients ususally have hypersensitive lungs, so it would be like if you had a cut, you wouldn't keep rubbing against it. You would avoid rubbing against it. Same thing for the lungs.

If your doctor doesn't address any of these things, you may have to get a second opinion at some point. But making your house healthy and making sure your baby is not exposed to bad air (even by avoiding using fragrances in the products you use) will help a lot and at the same time won't be contrary to your doctors' treatment or perhaps non-treatment.
 

Nightwriter

New member
Hi Andrea,

While I can't address what medical treatments a baby should get (I just don't know), I would like to respond to your confusion about what you can do otherwise to protect your baby's lungs. I can tell you that every doctor, except my present one, never said a word about the asthma component of CF, allergies, irritants or the role that inflamation plays in this disease. Under my old doctors, my lung function steadily declined, hospitalizations increased --as I became resistant to almost every drug.

When my present doctor taught me how to take "protective measures" in my home and my life, everything reversed. I was able to get off constant antibiotics. Nowadays when I am exposed to things that raise inflamation, I get sick. So I know for a fact, that you too can do things that can make a difference in trying to preserve your baby's lungs.

I asked my doctor the other day, why most doctors do not address asthma. Why do they prescribe antibiotics for everything, and why don't they address the obvious -- the quality of the air a patient breathes especially at home . Why don't they suggest eating healthy food without dyes, chemicals, sulfites, etc. (things that trigger asthma)...and she said because it is NOT usually taught in medical school. Although certainly some allergists address these things, amazingly some do not.

The reason my doctor became interested in this area was because she had a son with all kinds of weird ailments, horrible allergies, a learning disability where she was told not to expect much from him. When she changed his environment, and he became healthy, his became able to concentrate (he's now a doctor), and she started treating her patients the same way.

What is so great is that you are asking this question BEFORE the baby has problems. Babies' immune systems are still developing so they are even more sensitive. For instance, if you were to expose your baby to barbeque smoke, for instance, the smokes's particulates can do real damage to immature lungs (not good for anyone really). The same would go for carpet. If it were new carpet -- imagine "new carpet smell." All those fumes, adhesives, would go right into the baby's lungs. Old carpet has pollen, dander, mold, chemicals, dirt -- not to mention that the baby is going to be crawling on it, face right into it.

So what happens is, the more exposures, the lungs get more and more inflamed which causes airways to swell and constrict (asthma) more mucus builds up and gets trapped making it harder to get out. Then infections start.

Another example: If you clean with harsh chemicals or vacuum near the baby with a vacuum that kicks our dust -- that all irritates the baby's lungs. So if possible a HEPA vacuum and a good air filter really would make a difference.

CF patients ususally have hypersensitive lungs, so it would be like if you had a cut, you wouldn't keep rubbing against it. You would avoid rubbing against it. Same thing for the lungs.

If your doctor doesn't address any of these things, you may have to get a second opinion at some point. But making your house healthy and making sure your baby is not exposed to bad air (even by avoiding using fragrances in the products you use) will help a lot and at the same time won't be contrary to your doctors' treatment or perhaps non-treatment.
 

Nightwriter

New member
Hi Andrea,

While I can't address what medical treatments a baby should get (I just don't know), I would like to respond to your confusion about what you can do otherwise to protect your baby's lungs. I can tell you that every doctor, except my present one, never said a word about the asthma component of CF, allergies, irritants or the role that inflamation plays in this disease. Under my old doctors, my lung function steadily declined, hospitalizations increased --as I became resistant to almost every drug.

When my present doctor taught me how to take "protective measures" in my home and my life, everything reversed. I was able to get off constant antibiotics. Nowadays when I am exposed to things that raise inflamation, I get sick. So I know for a fact, that you too can do things that can make a difference in trying to preserve your baby's lungs.

I asked my doctor the other day, why most doctors do not address asthma. Why do they prescribe antibiotics for everything, and why don't they address the obvious -- the quality of the air a patient breathes especially at home . Why don't they suggest eating healthy food without dyes, chemicals, sulfites, etc. (things that trigger asthma)...and she said because it is NOT usually taught in medical school. Although certainly some allergists address these things, amazingly some do not.

The reason my doctor became interested in this area was because she had a son with all kinds of weird ailments, horrible allergies, a learning disability where she was told not to expect much from him. When she changed his environment, and he became healthy, his became able to concentrate (he's now a doctor), and she started treating her patients the same way.

What is so great is that you are asking this question BEFORE the baby has problems. Babies' immune systems are still developing so they are even more sensitive. For instance, if you were to expose your baby to barbeque smoke, for instance, the smokes's particulates can do real damage to immature lungs (not good for anyone really). The same would go for carpet. If it were new carpet -- imagine "new carpet smell." All those fumes, adhesives, would go right into the baby's lungs. Old carpet has pollen, dander, mold, chemicals, dirt -- not to mention that the baby is going to be crawling on it, face right into it.

So what happens is, the more exposures, the lungs get more and more inflamed which causes airways to swell and constrict (asthma) more mucus builds up and gets trapped making it harder to get out. Then infections start.

Another example: If you clean with harsh chemicals or vacuum near the baby with a vacuum that kicks our dust -- that all irritates the baby's lungs. So if possible a HEPA vacuum and a good air filter really would make a difference.

CF patients ususally have hypersensitive lungs, so it would be like if you had a cut, you wouldn't keep rubbing against it. You would avoid rubbing against it. Same thing for the lungs.

If your doctor doesn't address any of these things, you may have to get a second opinion at some point. But making your house healthy and making sure your baby is not exposed to bad air (even by avoiding using fragrances in the products you use) will help a lot and at the same time won't be contrary to your doctors' treatment or perhaps non-treatment.
 

Nightwriter

New member
Hi Andrea,

While I can't address what medical treatments a baby should get (I just don't know), I would like to respond to your confusion about what you can do otherwise to protect your baby's lungs. I can tell you that every doctor, except my present one, never said a word about the asthma component of CF, allergies, irritants or the role that inflamation plays in this disease. Under my old doctors, my lung function steadily declined, hospitalizations increased --as I became resistant to almost every drug.

When my present doctor taught me how to take "protective measures" in my home and my life, everything reversed. I was able to get off constant antibiotics. Nowadays when I am exposed to things that raise inflamation, I get sick. So I know for a fact, that you too can do things that can make a difference in trying to preserve your baby's lungs.

I asked my doctor the other day, why most doctors do not address asthma. Why do they prescribe antibiotics for everything, and why don't they address the obvious -- the quality of the air a patient breathes especially at home . Why don't they suggest eating healthy food without dyes, chemicals, sulfites, etc. (things that trigger asthma)...and she said because it is NOT usually taught in medical school. Although certainly some allergists address these things, amazingly some do not.

The reason my doctor became interested in this area was because she had a son with all kinds of weird ailments, horrible allergies, a learning disability where she was told not to expect much from him. When she changed his environment, and he became healthy, his became able to concentrate (he's now a doctor), and she started treating her patients the same way.

What is so great is that you are asking this question BEFORE the baby has problems. Babies' immune systems are still developing so they are even more sensitive. For instance, if you were to expose your baby to barbeque smoke, for instance, the smokes's particulates can do real damage to immature lungs (not good for anyone really). The same would go for carpet. If it were new carpet -- imagine "new carpet smell." All those fumes, adhesives, would go right into the baby's lungs. Old carpet has pollen, dander, mold, chemicals, dirt -- not to mention that the baby is going to be crawling on it, face right into it.

So what happens is, the more exposures, the lungs get more and more inflamed which causes airways to swell and constrict (asthma) more mucus builds up and gets trapped making it harder to get out. Then infections start.

Another example: If you clean with harsh chemicals or vacuum near the baby with a vacuum that kicks our dust -- that all irritates the baby's lungs. So if possible a HEPA vacuum and a good air filter really would make a difference.

CF patients ususally have hypersensitive lungs, so it would be like if you had a cut, you wouldn't keep rubbing against it. You would avoid rubbing against it. Same thing for the lungs.

If your doctor doesn't address any of these things, you may have to get a second opinion at some point. But making your house healthy and making sure your baby is not exposed to bad air (even by avoiding using fragrances in the products you use) will help a lot and at the same time won't be contrary to your doctors' treatment or perhaps non-treatment.
 

Nightwriter

New member
Hi Andrea,
<br />
<br />While I can't address what medical treatments a baby should get (I just don't know), I would like to respond to your confusion about what you can do otherwise to protect your baby's lungs. I can tell you that every doctor, except my present one, never said a word about the asthma component of CF, allergies, irritants or the role that inflamation plays in this disease. Under my old doctors, my lung function steadily declined, hospitalizations increased --as I became resistant to almost every drug.
<br />
<br />When my present doctor taught me how to take "protective measures" in my home and my life, everything reversed. I was able to get off constant antibiotics. Nowadays when I am exposed to things that raise inflamation, I get sick. So I know for a fact, that you too can do things that can make a difference in trying to preserve your baby's lungs.
<br />
<br />I asked my doctor the other day, why most doctors do not address asthma. Why do they prescribe antibiotics for everything, and why don't they address the obvious -- the quality of the air a patient breathes especially at home . Why don't they suggest eating healthy food without dyes, chemicals, sulfites, etc. (things that trigger asthma)...and she said because it is NOT usually taught in medical school. Although certainly some allergists address these things, amazingly some do not.
<br />
<br />The reason my doctor became interested in this area was because she had a son with all kinds of weird ailments, horrible allergies, a learning disability where she was told not to expect much from him. When she changed his environment, and he became healthy, his became able to concentrate (he's now a doctor), and she started treating her patients the same way.
<br />
<br />What is so great is that you are asking this question BEFORE the baby has problems. Babies' immune systems are still developing so they are even more sensitive. For instance, if you were to expose your baby to barbeque smoke, for instance, the smokes's particulates can do real damage to immature lungs (not good for anyone really). The same would go for carpet. If it were new carpet -- imagine "new carpet smell." All those fumes, adhesives, would go right into the baby's lungs. Old carpet has pollen, dander, mold, chemicals, dirt -- not to mention that the baby is going to be crawling on it, face right into it.
<br />
<br />So what happens is, the more exposures, the lungs get more and more inflamed which causes airways to swell and constrict (asthma) more mucus builds up and gets trapped making it harder to get out. Then infections start.
<br />
<br />Another example: If you clean with harsh chemicals or vacuum near the baby with a vacuum that kicks our dust -- that all irritates the baby's lungs. So if possible a HEPA vacuum and a good air filter really would make a difference.
<br />
<br />CF patients ususally have hypersensitive lungs, so it would be like if you had a cut, you wouldn't keep rubbing against it. You would avoid rubbing against it. Same thing for the lungs.
<br />
<br />If your doctor doesn't address any of these things, you may have to get a second opinion at some point. But making your house healthy and making sure your baby is not exposed to bad air (even by avoiding using fragrances in the products you use) will help a lot and at the same time won't be contrary to your doctors' treatment or perhaps non-treatment.
<br />
<br />
<br />
 
T

tammykrumrey

Guest
Andrea,

I understand those feelings...I have been there, too. I was so concerned when I read of all the things that other people with CF do. Even my own nephew (w/CF) did so many more things as an infant/child than my own girls had to do.

But I have asked my girls doctor about treatments plans and have been happy with the responses. Even my own two girls are not given the same plans because their CF is just not the same. Personally, I am happy that he doesn't treat them the same. For example, only one of my girls does Pulmozyme. When asked about my other one doing it, he gave me reasons as to why it wasn't best to start her yet. And when I did a little research, what I found backed up his reasons.

As an infant my nephew took antibiotics every day. I guess the idea at the time was to keep him from catching things. But, my girls have never been prescribed that course. Many do albuterol every day...my girls are only as needed.

Many say dr. say no pets, ours says as long as the girls are not allergic to them. I have seen others say no lakes, rivers, etc...ours says let them swim all they want...lakes and rivers are ok-just no hot tubs. We were told daycare was fine...others have said no daycare.

So, I would just ask about the things you read here, and find out why your dr. is doing the things he/she is.

I know it is frustrating. But it sounds like you are doing a great job!
 
T

tammykrumrey

Guest
Andrea,

I understand those feelings...I have been there, too. I was so concerned when I read of all the things that other people with CF do. Even my own nephew (w/CF) did so many more things as an infant/child than my own girls had to do.

But I have asked my girls doctor about treatments plans and have been happy with the responses. Even my own two girls are not given the same plans because their CF is just not the same. Personally, I am happy that he doesn't treat them the same. For example, only one of my girls does Pulmozyme. When asked about my other one doing it, he gave me reasons as to why it wasn't best to start her yet. And when I did a little research, what I found backed up his reasons.

As an infant my nephew took antibiotics every day. I guess the idea at the time was to keep him from catching things. But, my girls have never been prescribed that course. Many do albuterol every day...my girls are only as needed.

Many say dr. say no pets, ours says as long as the girls are not allergic to them. I have seen others say no lakes, rivers, etc...ours says let them swim all they want...lakes and rivers are ok-just no hot tubs. We were told daycare was fine...others have said no daycare.

So, I would just ask about the things you read here, and find out why your dr. is doing the things he/she is.

I know it is frustrating. But it sounds like you are doing a great job!
 
T

tammykrumrey

Guest
Andrea,

I understand those feelings...I have been there, too. I was so concerned when I read of all the things that other people with CF do. Even my own nephew (w/CF) did so many more things as an infant/child than my own girls had to do.

But I have asked my girls doctor about treatments plans and have been happy with the responses. Even my own two girls are not given the same plans because their CF is just not the same. Personally, I am happy that he doesn't treat them the same. For example, only one of my girls does Pulmozyme. When asked about my other one doing it, he gave me reasons as to why it wasn't best to start her yet. And when I did a little research, what I found backed up his reasons.

As an infant my nephew took antibiotics every day. I guess the idea at the time was to keep him from catching things. But, my girls have never been prescribed that course. Many do albuterol every day...my girls are only as needed.

Many say dr. say no pets, ours says as long as the girls are not allergic to them. I have seen others say no lakes, rivers, etc...ours says let them swim all they want...lakes and rivers are ok-just no hot tubs. We were told daycare was fine...others have said no daycare.

So, I would just ask about the things you read here, and find out why your dr. is doing the things he/she is.

I know it is frustrating. But it sounds like you are doing a great job!
 
T

tammykrumrey

Guest
Andrea,

I understand those feelings...I have been there, too. I was so concerned when I read of all the things that other people with CF do. Even my own nephew (w/CF) did so many more things as an infant/child than my own girls had to do.

But I have asked my girls doctor about treatments plans and have been happy with the responses. Even my own two girls are not given the same plans because their CF is just not the same. Personally, I am happy that he doesn't treat them the same. For example, only one of my girls does Pulmozyme. When asked about my other one doing it, he gave me reasons as to why it wasn't best to start her yet. And when I did a little research, what I found backed up his reasons.

As an infant my nephew took antibiotics every day. I guess the idea at the time was to keep him from catching things. But, my girls have never been prescribed that course. Many do albuterol every day...my girls are only as needed.

Many say dr. say no pets, ours says as long as the girls are not allergic to them. I have seen others say no lakes, rivers, etc...ours says let them swim all they want...lakes and rivers are ok-just no hot tubs. We were told daycare was fine...others have said no daycare.

So, I would just ask about the things you read here, and find out why your dr. is doing the things he/she is.

I know it is frustrating. But it sounds like you are doing a great job!
 
T

tammykrumrey

Guest
Andrea,
<br />
<br />I understand those feelings...I have been there, too. I was so concerned when I read of all the things that other people with CF do. Even my own nephew (w/CF) did so many more things as an infant/child than my own girls had to do.
<br />
<br />But I have asked my girls doctor about treatments plans and have been happy with the responses. Even my own two girls are not given the same plans because their CF is just not the same. Personally, I am happy that he doesn't treat them the same. For example, only one of my girls does Pulmozyme. When asked about my other one doing it, he gave me reasons as to why it wasn't best to start her yet. And when I did a little research, what I found backed up his reasons.
<br />
<br />As an infant my nephew took antibiotics every day. I guess the idea at the time was to keep him from catching things. But, my girls have never been prescribed that course. Many do albuterol every day...my girls are only as needed.
<br />
<br />Many say dr. say no pets, ours says as long as the girls are not allergic to them. I have seen others say no lakes, rivers, etc...ours says let them swim all they want...lakes and rivers are ok-just no hot tubs. We were told daycare was fine...others have said no daycare.
<br />
<br />So, I would just ask about the things you read here, and find out why your dr. is doing the things he/she is.
<br />
<br />I know it is frustrating. But it sounds like you are doing a great job!
 

MargaritaChic

New member
Obviously different people are going to have differing responses.

My daughter was started on a neb at 1 month old. She had no lung issues. We do it as a preventative measure. Our doctors and our family believe in being proactive. We do not want to wait until there is a lung issue and then try working backwards to fix it. We prefer to work now proactively to try to keep the germs out of her lungs before they have a chance to cause damage.


If you have not read up on Dr. Warrick from the University of MN you should look into him.

I was going to attached a document from him but it will not let me. There is a great table in there regarding why twice daily treatment is important. Send me a message with your email address if you are interested in seeing it.
 

MargaritaChic

New member
Obviously different people are going to have differing responses.

My daughter was started on a neb at 1 month old. She had no lung issues. We do it as a preventative measure. Our doctors and our family believe in being proactive. We do not want to wait until there is a lung issue and then try working backwards to fix it. We prefer to work now proactively to try to keep the germs out of her lungs before they have a chance to cause damage.


If you have not read up on Dr. Warrick from the University of MN you should look into him.

I was going to attached a document from him but it will not let me. There is a great table in there regarding why twice daily treatment is important. Send me a message with your email address if you are interested in seeing it.
 

MargaritaChic

New member
Obviously different people are going to have differing responses.

My daughter was started on a neb at 1 month old. She had no lung issues. We do it as a preventative measure. Our doctors and our family believe in being proactive. We do not want to wait until there is a lung issue and then try working backwards to fix it. We prefer to work now proactively to try to keep the germs out of her lungs before they have a chance to cause damage.


If you have not read up on Dr. Warrick from the University of MN you should look into him.

I was going to attached a document from him but it will not let me. There is a great table in there regarding why twice daily treatment is important. Send me a message with your email address if you are interested in seeing it.
 

MargaritaChic

New member
Obviously different people are going to have differing responses.

My daughter was started on a neb at 1 month old. She had no lung issues. We do it as a preventative measure. Our doctors and our family believe in being proactive. We do not want to wait until there is a lung issue and then try working backwards to fix it. We prefer to work now proactively to try to keep the germs out of her lungs before they have a chance to cause damage.


If you have not read up on Dr. Warrick from the University of MN you should look into him.

I was going to attached a document from him but it will not let me. There is a great table in there regarding why twice daily treatment is important. Send me a message with your email address if you are interested in seeing it.
 

MargaritaChic

New member
Obviously different people are going to have differing responses.
<br />
<br />My daughter was started on a neb at 1 month old. She had no lung issues. We do it as a preventative measure. Our doctors and our family believe in being proactive. We do not want to wait until there is a lung issue and then try working backwards to fix it. We prefer to work now proactively to try to keep the germs out of her lungs before they have a chance to cause damage.
<br />
<br />
<br />If you have not read up on Dr. Warrick from the University of MN you should look into him.
<br />
<br />I was going to attached a document from him but it will not let me. There is a great table in there regarding why twice daily treatment is important. Send me a message with your email address if you are interested in seeing it.
<br />
 

Ratatosk

Administrator
Staff member
Our local clinic is more reactive than proactive. So unless there are lung issues, they won't bring up CPT, nebs, etc. I know a couple of parents whose children didn't start CPT until their kids got pneumonia and pretty much stopped once they were better. Our primary CF doctor is very proactive, stresses keeping the lungs healthy.

So it almost seemed as if the local doctors were trying to discourage us buy telling us that if we didn't WANT to do CPT and nebs, we didn't HAVE to. I don't know if they don't want parents to be overwhelmed at first or they don't think it's necessary. In any event, we prefer to keep doing what we're doing. Minimum of 3 CPT/vest treatments a day.

I will say that when I come across CFers who primarily go to the local clinic and don't go to the more established CF clinics in the City or west of us they tend to look and sound like stereotypical CFers -- underweight, productive cough, raspy voice.... Whereas the others, seem normal.
 

Ratatosk

Administrator
Staff member
Our local clinic is more reactive than proactive. So unless there are lung issues, they won't bring up CPT, nebs, etc. I know a couple of parents whose children didn't start CPT until their kids got pneumonia and pretty much stopped once they were better. Our primary CF doctor is very proactive, stresses keeping the lungs healthy.

So it almost seemed as if the local doctors were trying to discourage us buy telling us that if we didn't WANT to do CPT and nebs, we didn't HAVE to. I don't know if they don't want parents to be overwhelmed at first or they don't think it's necessary. In any event, we prefer to keep doing what we're doing. Minimum of 3 CPT/vest treatments a day.

I will say that when I come across CFers who primarily go to the local clinic and don't go to the more established CF clinics in the City or west of us they tend to look and sound like stereotypical CFers -- underweight, productive cough, raspy voice.... Whereas the others, seem normal.
 

Ratatosk

Administrator
Staff member
Our local clinic is more reactive than proactive. So unless there are lung issues, they won't bring up CPT, nebs, etc. I know a couple of parents whose children didn't start CPT until their kids got pneumonia and pretty much stopped once they were better. Our primary CF doctor is very proactive, stresses keeping the lungs healthy.

So it almost seemed as if the local doctors were trying to discourage us buy telling us that if we didn't WANT to do CPT and nebs, we didn't HAVE to. I don't know if they don't want parents to be overwhelmed at first or they don't think it's necessary. In any event, we prefer to keep doing what we're doing. Minimum of 3 CPT/vest treatments a day.

I will say that when I come across CFers who primarily go to the local clinic and don't go to the more established CF clinics in the City or west of us they tend to look and sound like stereotypical CFers -- underweight, productive cough, raspy voice.... Whereas the others, seem normal.
 

Ratatosk

Administrator
Staff member
Our local clinic is more reactive than proactive. So unless there are lung issues, they won't bring up CPT, nebs, etc. I know a couple of parents whose children didn't start CPT until their kids got pneumonia and pretty much stopped once they were better. Our primary CF doctor is very proactive, stresses keeping the lungs healthy.

So it almost seemed as if the local doctors were trying to discourage us buy telling us that if we didn't WANT to do CPT and nebs, we didn't HAVE to. I don't know if they don't want parents to be overwhelmed at first or they don't think it's necessary. In any event, we prefer to keep doing what we're doing. Minimum of 3 CPT/vest treatments a day.

I will say that when I come across CFers who primarily go to the local clinic and don't go to the more established CF clinics in the City or west of us they tend to look and sound like stereotypical CFers -- underweight, productive cough, raspy voice.... Whereas the others, seem normal.
 

Ratatosk

Administrator
Staff member
Our local clinic is more reactive than proactive. So unless there are lung issues, they won't bring up CPT, nebs, etc. I know a couple of parents whose children didn't start CPT until their kids got pneumonia and pretty much stopped once they were better. Our primary CF doctor is very proactive, stresses keeping the lungs healthy.
<br />
<br />So it almost seemed as if the local doctors were trying to discourage us buy telling us that if we didn't WANT to do CPT and nebs, we didn't HAVE to. I don't know if they don't want parents to be overwhelmed at first or they don't think it's necessary. In any event, we prefer to keep doing what we're doing. Minimum of 3 CPT/vest treatments a day.
<br />
<br />I will say that when I come across CFers who primarily go to the local clinic and don't go to the more established CF clinics in the City or west of us they tend to look and sound like stereotypical CFers -- underweight, productive cough, raspy voice.... Whereas the others, seem normal.
 
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