I have a question that I know has no exact answer, but I am hoping to get some input anyway. My daughter is 13 and was diagnosed with cf last year. The only symptoms she has are all digestive related and occasionally a sinus related problem. She hasn't been "sick" since her diagnosis with the exception of needing a bowel clean out. How long can a cf patient go before having pulmonary problems? I know that people with milder cf sometimes develop symptoms later in life, but is it inevitable that pulmonary problems are coming, or could her cf always manifest as GI problems without pulmonary problems?
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- Thread starter Samsmom
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I have a question that I know has no exact answer, but I am hoping to get some input anyway. My daughter is 13 and was diagnosed with cf last year. The only symptoms she has are all digestive related and occasionally a sinus related problem. She hasn't been "sick" since her diagnosis with the exception of needing a bowel clean out. How long can a cf patient go before having pulmonary problems? I know that people with milder cf sometimes develop symptoms later in life, but is it inevitable that pulmonary problems are coming, or could her cf always manifest as GI problems without pulmonary problems?
I have a question that I know has no exact answer, but I am hoping to get some input anyway. My daughter is 13 and was diagnosed with cf last year. The only symptoms she has are all digestive related and occasionally a sinus related problem. She hasn't been "sick" since her diagnosis with the exception of needing a bowel clean out. How long can a cf patient go before having pulmonary problems? I know that people with milder cf sometimes develop symptoms later in life, but is it inevitable that pulmonary problems are coming, or could her cf always manifest as GI problems without pulmonary problems?
I think the CF doctors usually answer that question by saying "CF is a progressive disease and its effects accumulate over the years....but each individual is different and we can't predict how good or poor one person will fare in the future".
My boy with CF is 4 and the way I tend to cope with the uncertainty is to hope for the best case and do everything I can to prevent the bad stuff. He's had his share of bugs and drugs but still gets glowing reports from his doctors, so I tell myself that the long range view is affected by how we go through each day with the illness at least as much as it is affected by the genetics.
My boy with CF is 4 and the way I tend to cope with the uncertainty is to hope for the best case and do everything I can to prevent the bad stuff. He's had his share of bugs and drugs but still gets glowing reports from his doctors, so I tell myself that the long range view is affected by how we go through each day with the illness at least as much as it is affected by the genetics.
I think the CF doctors usually answer that question by saying "CF is a progressive disease and its effects accumulate over the years....but each individual is different and we can't predict how good or poor one person will fare in the future".
My boy with CF is 4 and the way I tend to cope with the uncertainty is to hope for the best case and do everything I can to prevent the bad stuff. He's had his share of bugs and drugs but still gets glowing reports from his doctors, so I tell myself that the long range view is affected by how we go through each day with the illness at least as much as it is affected by the genetics.
My boy with CF is 4 and the way I tend to cope with the uncertainty is to hope for the best case and do everything I can to prevent the bad stuff. He's had his share of bugs and drugs but still gets glowing reports from his doctors, so I tell myself that the long range view is affected by how we go through each day with the illness at least as much as it is affected by the genetics.
I think the CF doctors usually answer that question by saying "CF is a progressive disease and its effects accumulate over the years....but each individual is different and we can't predict how good or poor one person will fare in the future".
My boy with CF is 4 and the way I tend to cope with the uncertainty is to hope for the best case and do everything I can to prevent the bad stuff. He's had his share of bugs and drugs but still gets glowing reports from his doctors, so I tell myself that the long range view is affected by how we go through each day with the illness at least as much as it is affected by the genetics.
My boy with CF is 4 and the way I tend to cope with the uncertainty is to hope for the best case and do everything I can to prevent the bad stuff. He's had his share of bugs and drugs but still gets glowing reports from his doctors, so I tell myself that the long range view is affected by how we go through each day with the illness at least as much as it is affected by the genetics.
Guess the best thing to do is be proactive in your child's health care. Even though DS didn't exhibit any lung issues right away, we've been doing chest physiotherapy (now the vest) with nebulized bronchiodialtors since he was diagnosed at about a week old.
When he's gotten sick with an upper respiratory bug, we've increased his CPT treatments from 3 to 4 times a day. We usually contact his doctor -- sometimes based on how his cough sounds, he's prescribed an antibiotic.
We also try to keep him active -- encourage him to play outdoors, enrolled him in some activities...
When he's gotten sick with an upper respiratory bug, we've increased his CPT treatments from 3 to 4 times a day. We usually contact his doctor -- sometimes based on how his cough sounds, he's prescribed an antibiotic.
We also try to keep him active -- encourage him to play outdoors, enrolled him in some activities...
Guess the best thing to do is be proactive in your child's health care. Even though DS didn't exhibit any lung issues right away, we've been doing chest physiotherapy (now the vest) with nebulized bronchiodialtors since he was diagnosed at about a week old.
When he's gotten sick with an upper respiratory bug, we've increased his CPT treatments from 3 to 4 times a day. We usually contact his doctor -- sometimes based on how his cough sounds, he's prescribed an antibiotic.
We also try to keep him active -- encourage him to play outdoors, enrolled him in some activities...
When he's gotten sick with an upper respiratory bug, we've increased his CPT treatments from 3 to 4 times a day. We usually contact his doctor -- sometimes based on how his cough sounds, he's prescribed an antibiotic.
We also try to keep him active -- encourage him to play outdoors, enrolled him in some activities...
Guess the best thing to do is be proactive in your child's health care. Even though DS didn't exhibit any lung issues right away, we've been doing chest physiotherapy (now the vest) with nebulized bronchiodialtors since he was diagnosed at about a week old.
When he's gotten sick with an upper respiratory bug, we've increased his CPT treatments from 3 to 4 times a day. We usually contact his doctor -- sometimes based on how his cough sounds, he's prescribed an antibiotic.
We also try to keep him active -- encourage him to play outdoors, enrolled him in some activities...
When he's gotten sick with an upper respiratory bug, we've increased his CPT treatments from 3 to 4 times a day. We usually contact his doctor -- sometimes based on how his cough sounds, he's prescribed an antibiotic.
We also try to keep him active -- encourage him to play outdoors, enrolled him in some activities...
Unfortunately, there isn't a definite answer to that. I was very sick as a baby, but after that spell, CF really didn't even effect my life again until my late 20's. The only time anyone even suspected I had it was when I got colds, then they would ask "Are you sure you're not a closet smoker?", because I did sound pretty rattley.
As Liza said, activiity is key to keeping those lungs healthy in addition to the regimen your doctor prescribes for her.
I wish her the best<img src="i/expressions/face-icon-small-smile.gif" border="0">
As Liza said, activiity is key to keeping those lungs healthy in addition to the regimen your doctor prescribes for her.
I wish her the best<img src="i/expressions/face-icon-small-smile.gif" border="0">
Unfortunately, there isn't a definite answer to that. I was very sick as a baby, but after that spell, CF really didn't even effect my life again until my late 20's. The only time anyone even suspected I had it was when I got colds, then they would ask "Are you sure you're not a closet smoker?", because I did sound pretty rattley.
As Liza said, activiity is key to keeping those lungs healthy in addition to the regimen your doctor prescribes for her.
I wish her the best<img src="i/expressions/face-icon-small-smile.gif" border="0">
As Liza said, activiity is key to keeping those lungs healthy in addition to the regimen your doctor prescribes for her.
I wish her the best<img src="i/expressions/face-icon-small-smile.gif" border="0">
Unfortunately, there isn't a definite answer to that. I was very sick as a baby, but after that spell, CF really didn't even effect my life again until my late 20's. The only time anyone even suspected I had it was when I got colds, then they would ask "Are you sure you're not a closet smoker?", because I did sound pretty rattley.
As Liza said, activiity is key to keeping those lungs healthy in addition to the regimen your doctor prescribes for her.
I wish her the best<img src="i/expressions/face-icon-small-smile.gif" border="0">
As Liza said, activiity is key to keeping those lungs healthy in addition to the regimen your doctor prescribes for her.
I wish her the best<img src="i/expressions/face-icon-small-smile.gif" border="0">