What is atypical cf?

[hmw]

<div class="FTQUOTE"><begin quote>I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".

So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>
I agree- some doctors DO say that to parents. However, in my opinion- which I do realize is not an expert one by any means, but only one of a fellow parent of a child with CF- I would get another opinion from a top-notch CF center to be sure of this course of action.

I am *very* glad your child is doing so well (and not by any means doubting her good health or saying you are in denial since you are only following the advice of her doctors), but since this is such an important issue I'd want to be very sure. It's so easy for things of concern to 'creep in' over time and if a doctor has a mindset in place such as this one, it would be much easier for it to take longer for appropriate action to be taken. Again, this is just by opinion...

 

[hmw]

<div class="FTQUOTE"><begin quote>I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".

So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>
I agree- some doctors DO say that to parents. However, in my opinion- which I do realize is not an expert one by any means, but only one of a fellow parent of a child with CF- I would get another opinion from a top-notch CF center to be sure of this course of action.

I am *very* glad your child is doing so well (and not by any means doubting her good health or saying you are in denial since you are only following the advice of her doctors), but since this is such an important issue I'd want to be very sure. It's so easy for things of concern to 'creep in' over time and if a doctor has a mindset in place such as this one, it would be much easier for it to take longer for appropriate action to be taken. Again, this is just by opinion...

 

[hmw]

<div class="FTQUOTE"><begin quote>I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".

So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote></div>
I agree- some doctors DO say that to parents. However, in my opinion- which I do realize is not an expert one by any means, but only one of a fellow parent of a child with CF- I would get another opinion from a top-notch CF center to be sure of this course of action.

I am *very* glad your child is doing so well (and not by any means doubting her good health or saying you are in denial since you are only following the advice of her doctors), but since this is such an important issue I'd want to be very sure. It's so easy for things of concern to 'creep in' over time and if a doctor has a mindset in place such as this one, it would be much easier for it to take longer for appropriate action to be taken. Again, this is just by opinion...

 

[hmw]

<div class="FTQUOTE"><begin quote>I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".

So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote>
I agree- some doctors DO say that to parents. However, in my opinion- which I do realize is not an expert one by any means, but only one of a fellow parent of a child with CF- I would get another opinion from a top-notch CF center to be sure of this course of action.

I am *very* glad your child is doing so well (and not by any means doubting her good health or saying you are in denial since you are only following the advice of her doctors), but since this is such an important issue I'd want to be very sure. It's so easy for things of concern to 'creep in' over time and if a doctor has a mindset in place such as this one, it would be much easier for it to take longer for appropriate action to be taken. Again, this is just by opinion...

 

[hmw]

<div class="FTQUOTE"><begin quote>I've heard it used by another category though - the director of the pediatric CF clinic that my daughter goes to. He tells me that my daughter has atypical CF, and may well never have symptoms, and if she has any he'd expect them to be mild, and that we don't need to do daily CPT, and that they're trying to come up with a new category, currently being called CFTR Metabolic Disorder, for people with two mutations who don't actually "have CF". He says that the addition of genetic screening to newborn tests has caught a ton of kids that have "atypical CF".
<br />
<br />So I hear you, I do, about people wanting to wishful-think themselves out of cystic fibrosis by calling it atypical - but what do you do when that's what the doctors are calling it?</end quote>
<br />I agree- some doctors DO say that to parents. However, in my opinion- which I do realize is not an expert one by any means, but only one of a fellow parent of a child with CF- I would get another opinion from a top-notch CF center to be sure of this course of action.
<br />
<br />I am *very* glad your child is doing so well (and not by any means doubting her good health or saying you are in denial since you are only following the advice of her doctors), but since this is such an important issue I'd want to be very sure. It's so easy for things of concern to 'creep in' over time and if a doctor has a mindset in place such as this one, it would be much easier for it to take longer for appropriate action to be taken. Again, this is just by opinion...

 

[Cherylwithone]

I think they should do away with the extra labels..."atypical" who is to say what atypical is. I think
sometimes it gets in the way of treatment. Example, last this in December DD gets really sick we end of in the ER.
THey draw blood but don't run the labs. They go oh she is atypical. Let's wait and see what happens. This is what happens. Her weight drops down to 84 pounds, she is so sick that when her CF doctor and Gi doctor saw her a few days later they do a direct admit. Renal is involved along with endocrin and a few others. We started to get the blame for her being so sick and I informed them I did not label her atypical they did. I did not drop the ball by not running the labs, they did. This is their mess they owen it. I talked to the head of the CF clinic and told him if the ER did not see atypical on her records she would not have gotten so sick. It was so bad that one of the dr's called her a sicking ship. The head of CF clinic said they are trying to remove lables like that because it takes just one bad infection to change everything. My dd's gi tract is trashed because of the cf. Her sinus are not much better. Her lungs only take a few hits for that we are very thankful. That is my two cents on labels

 

[Cherylwithone]

I think they should do away with the extra labels..."atypical" who is to say what atypical is. I think
sometimes it gets in the way of treatment. Example, last this in December DD gets really sick we end of in the ER.
THey draw blood but don't run the labs. They go oh she is atypical. Let's wait and see what happens. This is what happens. Her weight drops down to 84 pounds, she is so sick that when her CF doctor and Gi doctor saw her a few days later they do a direct admit. Renal is involved along with endocrin and a few others. We started to get the blame for her being so sick and I informed them I did not label her atypical they did. I did not drop the ball by not running the labs, they did. This is their mess they owen it. I talked to the head of the CF clinic and told him if the ER did not see atypical on her records she would not have gotten so sick. It was so bad that one of the dr's called her a sicking ship. The head of CF clinic said they are trying to remove lables like that because it takes just one bad infection to change everything. My dd's gi tract is trashed because of the cf. Her sinus are not much better. Her lungs only take a few hits for that we are very thankful. That is my two cents on labels

 

[Cherylwithone]

I think they should do away with the extra labels..."atypical" who is to say what atypical is. I think
sometimes it gets in the way of treatment. Example, last this in December DD gets really sick we end of in the ER.
THey draw blood but don't run the labs. They go oh she is atypical. Let's wait and see what happens. This is what happens. Her weight drops down to 84 pounds, she is so sick that when her CF doctor and Gi doctor saw her a few days later they do a direct admit. Renal is involved along with endocrin and a few others. We started to get the blame for her being so sick and I informed them I did not label her atypical they did. I did not drop the ball by not running the labs, they did. This is their mess they owen it. I talked to the head of the CF clinic and told him if the ER did not see atypical on her records she would not have gotten so sick. It was so bad that one of the dr's called her a sicking ship. The head of CF clinic said they are trying to remove lables like that because it takes just one bad infection to change everything. My dd's gi tract is trashed because of the cf. Her sinus are not much better. Her lungs only take a few hits for that we are very thankful. That is my two cents on labels

 

[Cherylwithone]

I think they should do away with the extra labels..."atypical" who is to say what atypical is. I think
sometimes it gets in the way of treatment. Example, last this in December DD gets really sick we end of in the ER.
THey draw blood but don't run the labs. They go oh she is atypical. Let's wait and see what happens. This is what happens. Her weight drops down to 84 pounds, she is so sick that when her CF doctor and Gi doctor saw her a few days later they do a direct admit. Renal is involved along with endocrin and a few others. We started to get the blame for her being so sick and I informed them I did not label her atypical they did. I did not drop the ball by not running the labs, they did. This is their mess they owen it. I talked to the head of the CF clinic and told him if the ER did not see atypical on her records she would not have gotten so sick. It was so bad that one of the dr's called her a sicking ship. The head of CF clinic said they are trying to remove lables like that because it takes just one bad infection to change everything. My dd's gi tract is trashed because of the cf. Her sinus are not much better. Her lungs only take a few hits for that we are very thankful. That is my two cents on labels

 

[Cherylwithone]

I think they should do away with the extra labels..."atypical" who is to say what atypical is. I think
<br />sometimes it gets in the way of treatment. Example, last this in December DD gets really sick we end of in the ER.
<br />THey draw blood but don't run the labs. They go oh she is atypical. Let's wait and see what happens. This is what happens. Her weight drops down to 84 pounds, she is so sick that when her CF doctor and Gi doctor saw her a few days later they do a direct admit. Renal is involved along with endocrin and a few others. We started to get the blame for her being so sick and I informed them I did not label her atypical they did. I did not drop the ball by not running the labs, they did. This is their mess they owen it. I talked to the head of the CF clinic and told him if the ER did not see atypical on her records she would not have gotten so sick. It was so bad that one of the dr's called her a sicking ship. The head of CF clinic said they are trying to remove lables like that because it takes just one bad infection to change everything. My dd's gi tract is trashed because of the cf. Her sinus are not much better. Her lungs only take a few hits for that we are very thankful. That is my two cents on labels

 

[MicheleGazelle]

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".

 

[MicheleGazelle]

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".

 

[MicheleGazelle]

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".

 

[MicheleGazelle]

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".

 

[MicheleGazelle]

I'm sorry to hear that. But I can sympathize. Because I am considered "mild" or "atypical", I had difficulty getting taken seriously by doctors. I got taken more seriously than I had been prior to having a diagnosis, but even though I spent a year at death's door, I was kind of blown off as "not being that sick for someone with CF".

 

[Ratatosk]

Our primary cf doctor in the city has the opinion that there is no such thing as mild cf -- the progressive disease view. Our local clinic is the other extreme and uses terms such as "IF the lungs become affected..." they'll address those issue, otherwise they don't emphasize CPT or nebs for anyone.

So we've got two accreditted CF clinics -- One is proactive, one is reactive.

 

[Ratatosk]

Our primary cf doctor in the city has the opinion that there is no such thing as mild cf -- the progressive disease view. Our local clinic is the other extreme and uses terms such as "IF the lungs become affected..." they'll address those issue, otherwise they don't emphasize CPT or nebs for anyone.

So we've got two accreditted CF clinics -- One is proactive, one is reactive.

 

[Ratatosk]

Our primary cf doctor in the city has the opinion that there is no such thing as mild cf -- the progressive disease view. Our local clinic is the other extreme and uses terms such as "IF the lungs become affected..." they'll address those issue, otherwise they don't emphasize CPT or nebs for anyone.

So we've got two accreditted CF clinics -- One is proactive, one is reactive.

 

[Ratatosk]

Our primary cf doctor in the city has the opinion that there is no such thing as mild cf -- the progressive disease view. Our local clinic is the other extreme and uses terms such as "IF the lungs become affected..." they'll address those issue, otherwise they don't emphasize CPT or nebs for anyone.

So we've got two accreditted CF clinics -- One is proactive, one is reactive.

 

[Ratatosk]

Our primary cf doctor in the city has the opinion that there is no such thing as mild cf -- the progressive disease view. Our local clinic is the other extreme and uses terms such as "IF the lungs become affected..." they'll address those issue, otherwise they don't emphasize CPT or nebs for anyone.
<br />
<br />So we've got two accreditted CF clinics -- One is proactive, one is reactive.