Are symptoms of cf there all the time or can they have a degree of variability? - do they happen worse sometimes than others like 'flare ups'? Is the beige coloured bowel movements anything anyone can relate to? My lad has gastric symptoms but not always? I have tried to find some answers on net but not sure where to look. wondered if you could help, Thanks kelly x
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SYMPTOMS OF CF
- Thread starter kelly7675
- Start date
Are symptoms of cf there all the time or can they have a degree of variability? - do they happen worse sometimes than others like 'flare ups'? Is the beige coloured bowel movements anything anyone can relate to? My lad has gastric symptoms but not always? I have tried to find some answers on net but not sure where to look. wondered if you could help, Thanks kelly x
Are symptoms of cf there all the time or can they have a degree of variability? - do they happen worse sometimes than others like 'flare ups'? Is the beige coloured bowel movements anything anyone can relate to? My lad has gastric symptoms but not always? I have tried to find some answers on net but not sure where to look. wondered if you could help, Thanks kelly x
A
Aspiemom
Guest
Hi Kelly,
Everyone's symptoms tend to be different, and they can vary according to the genes, your age, your compliance, etc.
For example, my cough is not very productive and others will be coughing stuff up all of the time. I have more of an asthma cough.
I have a constant problem, year round, with my sinuses as the Pseudomonas keeps growing there, then drains to my lungs, so I have to be aggressive in treating that.
I'm not sure if your lad is culturing PA or what, but once you start culturing those you have will have worse times than others. I will feel pretty good and then as it builds up I have a harder time ("flare up" as you put it) and have to do IV's to cut the bacteria back and then I'm okay for about 6 mos. Some people don't need to do IV's for years and some every few months, it varies.
My pancreas has just in the last year been deemed "Moderately insufficient" so I can't answer much on the bowel symptom, but hopefully someone else will.
Everyone's symptoms tend to be different, and they can vary according to the genes, your age, your compliance, etc.
For example, my cough is not very productive and others will be coughing stuff up all of the time. I have more of an asthma cough.
I have a constant problem, year round, with my sinuses as the Pseudomonas keeps growing there, then drains to my lungs, so I have to be aggressive in treating that.
I'm not sure if your lad is culturing PA or what, but once you start culturing those you have will have worse times than others. I will feel pretty good and then as it builds up I have a harder time ("flare up" as you put it) and have to do IV's to cut the bacteria back and then I'm okay for about 6 mos. Some people don't need to do IV's for years and some every few months, it varies.
My pancreas has just in the last year been deemed "Moderately insufficient" so I can't answer much on the bowel symptom, but hopefully someone else will.
A
Aspiemom
Guest
Hi Kelly,
Everyone's symptoms tend to be different, and they can vary according to the genes, your age, your compliance, etc.
For example, my cough is not very productive and others will be coughing stuff up all of the time. I have more of an asthma cough.
I have a constant problem, year round, with my sinuses as the Pseudomonas keeps growing there, then drains to my lungs, so I have to be aggressive in treating that.
I'm not sure if your lad is culturing PA or what, but once you start culturing those you have will have worse times than others. I will feel pretty good and then as it builds up I have a harder time ("flare up" as you put it) and have to do IV's to cut the bacteria back and then I'm okay for about 6 mos. Some people don't need to do IV's for years and some every few months, it varies.
My pancreas has just in the last year been deemed "Moderately insufficient" so I can't answer much on the bowel symptom, but hopefully someone else will.
Everyone's symptoms tend to be different, and they can vary according to the genes, your age, your compliance, etc.
For example, my cough is not very productive and others will be coughing stuff up all of the time. I have more of an asthma cough.
I have a constant problem, year round, with my sinuses as the Pseudomonas keeps growing there, then drains to my lungs, so I have to be aggressive in treating that.
I'm not sure if your lad is culturing PA or what, but once you start culturing those you have will have worse times than others. I will feel pretty good and then as it builds up I have a harder time ("flare up" as you put it) and have to do IV's to cut the bacteria back and then I'm okay for about 6 mos. Some people don't need to do IV's for years and some every few months, it varies.
My pancreas has just in the last year been deemed "Moderately insufficient" so I can't answer much on the bowel symptom, but hopefully someone else will.
A
Aspiemom
Guest
Hi Kelly,
<br />Everyone's symptoms tend to be different, and they can vary according to the genes, your age, your compliance, etc.
<br />
<br />For example, my cough is not very productive and others will be coughing stuff up all of the time. I have more of an asthma cough.
<br />
<br />I have a constant problem, year round, with my sinuses as the Pseudomonas keeps growing there, then drains to my lungs, so I have to be aggressive in treating that.
<br />
<br />I'm not sure if your lad is culturing PA or what, but once you start culturing those you have will have worse times than others. I will feel pretty good and then as it builds up I have a harder time ("flare up" as you put it) and have to do IV's to cut the bacteria back and then I'm okay for about 6 mos. Some people don't need to do IV's for years and some every few months, it varies.
<br />
<br />My pancreas has just in the last year been deemed "Moderately insufficient" so I can't answer much on the bowel symptom, but hopefully someone else will.
<br />Everyone's symptoms tend to be different, and they can vary according to the genes, your age, your compliance, etc.
<br />
<br />For example, my cough is not very productive and others will be coughing stuff up all of the time. I have more of an asthma cough.
<br />
<br />I have a constant problem, year round, with my sinuses as the Pseudomonas keeps growing there, then drains to my lungs, so I have to be aggressive in treating that.
<br />
<br />I'm not sure if your lad is culturing PA or what, but once you start culturing those you have will have worse times than others. I will feel pretty good and then as it builds up I have a harder time ("flare up" as you put it) and have to do IV's to cut the bacteria back and then I'm okay for about 6 mos. Some people don't need to do IV's for years and some every few months, it varies.
<br />
<br />My pancreas has just in the last year been deemed "Moderately insufficient" so I can't answer much on the bowel symptom, but hopefully someone else will.
Thanks for that its really helpful to get a better understanding, my lad is being treated as asthma at mo, with a negative sweat test, but im not convinced, he has 2-3 admissions a year. usually with chronic low oxygen that stay down for weeks after, he has clubbing to fingers and toes and has been left with a productive cough since last admission end of november. I have an appt with respiratory consultant in 2 weeks so gonna discuss sweat test and ? genetic - my father in law has copd and his diagnosis doesn't quite tally with his symptoms either. I posted a question on asthma forum and no one knew anything about the bowel thing - not usual symtom for asthma. The only link i can see is the mucus blocking the bile preventing it colouring (sorry bout topic) Thanks again. kelly
Thanks for that its really helpful to get a better understanding, my lad is being treated as asthma at mo, with a negative sweat test, but im not convinced, he has 2-3 admissions a year. usually with chronic low oxygen that stay down for weeks after, he has clubbing to fingers and toes and has been left with a productive cough since last admission end of november. I have an appt with respiratory consultant in 2 weeks so gonna discuss sweat test and ? genetic - my father in law has copd and his diagnosis doesn't quite tally with his symptoms either. I posted a question on asthma forum and no one knew anything about the bowel thing - not usual symtom for asthma. The only link i can see is the mucus blocking the bile preventing it colouring (sorry bout topic) Thanks again. kelly
Thanks for that its really helpful to get a better understanding, my lad is being treated as asthma at mo, with a negative sweat test, but im not convinced, he has 2-3 admissions a year. usually with chronic low oxygen that stay down for weeks after, he has clubbing to fingers and toes and has been left with a productive cough since last admission end of november. I have an appt with respiratory consultant in 2 weeks so gonna discuss sweat test and ? genetic - my father in law has copd and his diagnosis doesn't quite tally with his symptoms either. I posted a question on asthma forum and no one knew anything about the bowel thing - not usual symtom for asthma. The only link i can see is the mucus blocking the bile preventing it colouring (sorry bout topic) Thanks again. kelly
Kelly:
I would suggest that you make an appointment at your nearest CF Center, with a CF specialist. Your son needs to have a full range of genetic screening. Respectfully, local doctors/hospitals are not the solution.
My primary care physician is in one of the largest hospitals in Boston and he would tell you that he has very limited knowledge about CF. I go to a CF Research Hospital/Clinic for my CF needs.
Bill
I would suggest that you make an appointment at your nearest CF Center, with a CF specialist. Your son needs to have a full range of genetic screening. Respectfully, local doctors/hospitals are not the solution.
My primary care physician is in one of the largest hospitals in Boston and he would tell you that he has very limited knowledge about CF. I go to a CF Research Hospital/Clinic for my CF needs.
Bill
Kelly:
I would suggest that you make an appointment at your nearest CF Center, with a CF specialist. Your son needs to have a full range of genetic screening. Respectfully, local doctors/hospitals are not the solution.
My primary care physician is in one of the largest hospitals in Boston and he would tell you that he has very limited knowledge about CF. I go to a CF Research Hospital/Clinic for my CF needs.
Bill
I would suggest that you make an appointment at your nearest CF Center, with a CF specialist. Your son needs to have a full range of genetic screening. Respectfully, local doctors/hospitals are not the solution.
My primary care physician is in one of the largest hospitals in Boston and he would tell you that he has very limited knowledge about CF. I go to a CF Research Hospital/Clinic for my CF needs.
Bill
Kelly:
<br />
<br />I would suggest that you make an appointment at your nearest CF Center, with a CF specialist. Your son needs to have a full range of genetic screening. Respectfully, local doctors/hospitals are not the solution.
<br />
<br />My primary care physician is in one of the largest hospitals in Boston and he would tell you that he has very limited knowledge about CF. I go to a CF Research Hospital/Clinic for my CF needs.
<br />
<br />Bill
<br />
<br />I would suggest that you make an appointment at your nearest CF Center, with a CF specialist. Your son needs to have a full range of genetic screening. Respectfully, local doctors/hospitals are not the solution.
<br />
<br />My primary care physician is in one of the largest hospitals in Boston and he would tell you that he has very limited knowledge about CF. I go to a CF Research Hospital/Clinic for my CF needs.
<br />
<br />Bill
Ok thanks for that - the nearest specialist centre to us is in birmingham, to be fair the respiratory doc said if no change from last appt then we will have care transfered to them for full testing. Just preparing myself - I like to know what to expect and thats the reason for asking questions. I see a lot of asthma in my own work and the pattern of illness is quiet a bit different. kelly
Ok thanks for that - the nearest specialist centre to us is in birmingham, to be fair the respiratory doc said if no change from last appt then we will have care transfered to them for full testing. Just preparing myself - I like to know what to expect and thats the reason for asking questions. I see a lot of asthma in my own work and the pattern of illness is quiet a bit different. kelly
Ok thanks for that - the nearest specialist centre to us is in birmingham, to be fair the respiratory doc said if no change from last appt then we will have care transfered to them for full testing. Just preparing myself - I like to know what to expect and thats the reason for asking questions. I see a lot of asthma in my own work and the pattern of illness is quiet a bit different. kelly
A
Aspiemom
Guest
Kelly, my sweat test always came out negative or borderline. Johns Hopkins sent my blood to Ambry Genetics Lab after finding Pseudomonas in my lungs and that's how I was dx. I think that is much more definitive than the sweat test, which doesn't seem to be too accurate.
A
Aspiemom
Guest
Kelly, my sweat test always came out negative or borderline. Johns Hopkins sent my blood to Ambry Genetics Lab after finding Pseudomonas in my lungs and that's how I was dx. I think that is much more definitive than the sweat test, which doesn't seem to be too accurate.
A
Aspiemom
Guest
Kelly, my sweat test always came out negative or borderline. Johns Hopkins sent my blood to Ambry Genetics Lab after finding Pseudomonas in my lungs and that's how I was dx. I think that is much more definitive than the sweat test, which doesn't seem to be too accurate.