grassisgreener
New member
Since there is a big difference between the "newly diagnosed" phase and the "could it be CF?" phase, maybe a seperate board would be an idea to consider?
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Newly Diagnosed Section
- Thread starter Buckeye
- Start date
grassisgreener
New member
Since there is a big difference between the "newly diagnosed" phase and the "could it be CF?" phase, maybe a seperate board would be an idea to consider?
grassisgreener
New member
Since there is a big difference between the "newly diagnosed" phase and the "could it be CF?" phase, maybe a seperate board would be an idea to consider?
grassisgreener
New member
Since there is a big difference between the "newly diagnosed" phase and the "could it be CF?" phase, maybe a seperate board would be an idea to consider?
grassisgreener
New member
Since there is a big difference between the "newly diagnosed" phase and the "could it be CF?" phase, maybe a seperate board would be an idea to consider?
saveferris2009
New member
.
saveferris2009
New member
.
saveferris2009
New member
.
saveferris2009
New member
.
saveferris2009
New member
.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote></div>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote></div>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote></div>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote></div>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote></div>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote></div>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
</end quote>
Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>saveferris2009</b></i>
<br />
<br />1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
<br /></end quote>
<br />
<br />Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
<br />
<br />While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
<br />
<br />
<br />1. If you're going to ask the question, you're going to get an answer. There has to be some personal responsibility taken by the poster. If you don't want to hear an answer that we think the kid has CF, then don't post.
<br /></end quote>
<br />
<br />Amy, there's a time and place for everything and a certain tact that should go along with your posts. That's like saying "I flew in a plane, so I can fly a plane" or when a person posts about someone that has passed away from CF, we don't post "We'll you knew they had CF, you knew they would die of CF!"
<br />
<br />While the reality of CF sucks, it stills basically comes down to we can't predict the reality of someone's CF. We know each case is different and a child born today w/ CF is much different from a child born 25 years ago.
<br />
Sakem, I don't think she was going as far as you imply (ie death). She was just expressing the fact that CF is not nice, and if your child has CF it is just as much a disservice for us to pretend it is not as bad as it is as it would be to go too far.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
Sakem, I don't think she was going as far as you imply (ie death). She was just expressing the fact that CF is not nice, and if your child has CF it is just as much a disservice for us to pretend it is not as bad as it is as it would be to go too far.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
Sakem, I don't think she was going as far as you imply (ie death). She was just expressing the fact that CF is not nice, and if your child has CF it is just as much a disservice for us to pretend it is not as bad as it is as it would be to go too far.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
Sakem, I don't think she was going as far as you imply (ie death). She was just expressing the fact that CF is not nice, and if your child has CF it is just as much a disservice for us to pretend it is not as bad as it is as it would be to go too far.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
My thoughts are pretty simple:
1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
Sakem, I don't think she was going as far as you imply (ie death). She was just expressing the fact that CF is not nice, and if your child has CF it is just as much a disservice for us to pretend it is not as bad as it is as it would be to go too far.
<br />
<br />I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
<br />
<br />My thoughts are pretty simple:
<br />
<br />1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
<br />
<br />2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
<br />
<br />3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
<br />
<br />As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
<br />
<br />In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
<br />
<br />
<br />I tend to be slow to respond to the newly diagnosed as I chose to raise a child with CF, and with signficant complications so I didn't have the moment in time when someone had to tell me my child had CF.
<br />
<br />My thoughts are pretty simple:
<br />
<br />1) If you come and your child (or you) has chronic colds, GI issues, etc that might be CF and you are looking for more info: we should be gentle and helpful
<br />
<br />2) if they have signs/symptoms that are LIKELY CF (based upon the collective knowledge of the users here) then again temper, but help them to start to understand what it means to live with CF.
<br />
<br />3) if they come because the child has been dx'd with CF, then while tact is warranted, their life is already shaken, be polite but honest. There is no reason to use kid gloves, CF is a nasty disease and there is very little 'pretty' about it. This sucks, it hurts, it devastates, but not being honest is not helping anyone.
<br />
<br />As for those on the board with 'miracle stories', yes there are cases of cystics living to 60+, cases of ones w/ atypical CF that have few if any issues, cases of people that go years between abx; but this is not reality.
<br />
<br />In my opinion (and I'm sure many will disagree) the most helpful posts would be ones about how to live with what life has dealt and what to prepare for; not how to avoid the reality of it.
<br />