Any help and advice really appreciated

Destiny4Always

New member
Hi everyone, my daughter is 14 and has just been told she has pneumonia in her right lung, and has just had bloods taken, to test for what i am not sure although after reading up on CF after the pediatrician mentioned it i have realised just how her health slots in to this illness or disease.

She has always had problems with phlem and her chest, when she was born i put it down to them not sucking out all the fluid from her lungs. At 6 weeks old she was in hospital with a respiritory bug, then again at 6 months for a gastrointestinal bug. Since then she has coughed and most of her way through till now, she's had earache after earache, grommits in the ears and has always sounded blocked up, wheezy but never had an asthma attack. Then when she was about 8 she started with her stomach after she ate, it got worse and since going to high school they just put it down to Irritable bowel syndrome affected by the stress off school and work. She has missed so much school in the last year and a half because off her health.

As for my understanding of CF i was under the impression that if you had it, you were born with it and you would KNOW you had it. No way could it go undetected so untill yesterday when we were at the hospital, it never crossed my mind. Since Early november, my daughter had been coughing alot, they changed her inhalers which didnt help, she then took what we were told was a viral bug and the dr didnt want to give her antibiotics, few weeks later she was still coughing and chesty, so gives her antiobiotics, 3 weeks after that another course of antibiotics at which point she was feeling slightly better but very run down, however on xmas eve she took unwell again, really tired, lack off interest in everything, coughing and no appetite what so ever....and was like that for 2 weeks, dr said to ride it out. Eventually went back to dr after she was in so much pain in her back, they eventually sent her for an xray which showed pneumonia on her right lung. Yesterday we attended an appointment where they told me how to help dislodge the mucus, and have taken bloody tests and asked loads off questions about her health history...the first time that ive felt anyone take a look at her health as a whole and not just the individual problems and when i looked up CF its the only thing that has listed every single problem she has had in the past.

Ive seen there are people here who were diagnosed with CF later on, in or round about their teends. I would be really interested to hear what brought you to being diagnosed and what your health was like beforehand. I guess i am still in shock and although we dont have a positive diagnosis yet, i have a horrible feeling its just a matter off time. I have no idea what that means for my daughter, i havent even looked at that side off it. Any help and advice or stories that anyone would like to share with me would be truely appreciated.

Sorry if this seems a bit hectic and rambled, i dont seem to be functioning very well at the moment, my thoughts are everywhere! so my apologies.

Kind regards
Lisa
daughter rhianne, who is 14 years old and she has a sister, Regan, who is 11yrs old.
 

Destiny4Always

New member
Hi everyone, my daughter is 14 and has just been told she has pneumonia in her right lung, and has just had bloods taken, to test for what i am not sure although after reading up on CF after the pediatrician mentioned it i have realised just how her health slots in to this illness or disease.

She has always had problems with phlem and her chest, when she was born i put it down to them not sucking out all the fluid from her lungs. At 6 weeks old she was in hospital with a respiritory bug, then again at 6 months for a gastrointestinal bug. Since then she has coughed and most of her way through till now, she's had earache after earache, grommits in the ears and has always sounded blocked up, wheezy but never had an asthma attack. Then when she was about 8 she started with her stomach after she ate, it got worse and since going to high school they just put it down to Irritable bowel syndrome affected by the stress off school and work. She has missed so much school in the last year and a half because off her health.

As for my understanding of CF i was under the impression that if you had it, you were born with it and you would KNOW you had it. No way could it go undetected so untill yesterday when we were at the hospital, it never crossed my mind. Since Early november, my daughter had been coughing alot, they changed her inhalers which didnt help, she then took what we were told was a viral bug and the dr didnt want to give her antibiotics, few weeks later she was still coughing and chesty, so gives her antiobiotics, 3 weeks after that another course of antibiotics at which point she was feeling slightly better but very run down, however on xmas eve she took unwell again, really tired, lack off interest in everything, coughing and no appetite what so ever....and was like that for 2 weeks, dr said to ride it out. Eventually went back to dr after she was in so much pain in her back, they eventually sent her for an xray which showed pneumonia on her right lung. Yesterday we attended an appointment where they told me how to help dislodge the mucus, and have taken bloody tests and asked loads off questions about her health history...the first time that ive felt anyone take a look at her health as a whole and not just the individual problems and when i looked up CF its the only thing that has listed every single problem she has had in the past.

Ive seen there are people here who were diagnosed with CF later on, in or round about their teends. I would be really interested to hear what brought you to being diagnosed and what your health was like beforehand. I guess i am still in shock and although we dont have a positive diagnosis yet, i have a horrible feeling its just a matter off time. I have no idea what that means for my daughter, i havent even looked at that side off it. Any help and advice or stories that anyone would like to share with me would be truely appreciated.

Sorry if this seems a bit hectic and rambled, i dont seem to be functioning very well at the moment, my thoughts are everywhere! so my apologies.

Kind regards
Lisa
daughter rhianne, who is 14 years old and she has a sister, Regan, who is 11yrs old.
 

Destiny4Always

New member
Hi everyone, my daughter is 14 and has just been told she has pneumonia in her right lung, and has just had bloods taken, to test for what i am not sure although after reading up on CF after the pediatrician mentioned it i have realised just how her health slots in to this illness or disease.

She has always had problems with phlem and her chest, when she was born i put it down to them not sucking out all the fluid from her lungs. At 6 weeks old she was in hospital with a respiritory bug, then again at 6 months for a gastrointestinal bug. Since then she has coughed and most of her way through till now, she's had earache after earache, grommits in the ears and has always sounded blocked up, wheezy but never had an asthma attack. Then when she was about 8 she started with her stomach after she ate, it got worse and since going to high school they just put it down to Irritable bowel syndrome affected by the stress off school and work. She has missed so much school in the last year and a half because off her health.

As for my understanding of CF i was under the impression that if you had it, you were born with it and you would KNOW you had it. No way could it go undetected so untill yesterday when we were at the hospital, it never crossed my mind. Since Early november, my daughter had been coughing alot, they changed her inhalers which didnt help, she then took what we were told was a viral bug and the dr didnt want to give her antibiotics, few weeks later she was still coughing and chesty, so gives her antiobiotics, 3 weeks after that another course of antibiotics at which point she was feeling slightly better but very run down, however on xmas eve she took unwell again, really tired, lack off interest in everything, coughing and no appetite what so ever....and was like that for 2 weeks, dr said to ride it out. Eventually went back to dr after she was in so much pain in her back, they eventually sent her for an xray which showed pneumonia on her right lung. Yesterday we attended an appointment where they told me how to help dislodge the mucus, and have taken bloody tests and asked loads off questions about her health history...the first time that ive felt anyone take a look at her health as a whole and not just the individual problems and when i looked up CF its the only thing that has listed every single problem she has had in the past.

Ive seen there are people here who were diagnosed with CF later on, in or round about their teends. I would be really interested to hear what brought you to being diagnosed and what your health was like beforehand. I guess i am still in shock and although we dont have a positive diagnosis yet, i have a horrible feeling its just a matter off time. I have no idea what that means for my daughter, i havent even looked at that side off it. Any help and advice or stories that anyone would like to share with me would be truely appreciated.

Sorry if this seems a bit hectic and rambled, i dont seem to be functioning very well at the moment, my thoughts are everywhere! so my apologies.

Kind regards
Lisa
daughter rhianne, who is 14 years old and she has a sister, Regan, who is 11yrs old.
 

Destiny4Always

New member
Hi everyone, my daughter is 14 and has just been told she has pneumonia in her right lung, and has just had bloods taken, to test for what i am not sure although after reading up on CF after the pediatrician mentioned it i have realised just how her health slots in to this illness or disease.

She has always had problems with phlem and her chest, when she was born i put it down to them not sucking out all the fluid from her lungs. At 6 weeks old she was in hospital with a respiritory bug, then again at 6 months for a gastrointestinal bug. Since then she has coughed and most of her way through till now, she's had earache after earache, grommits in the ears and has always sounded blocked up, wheezy but never had an asthma attack. Then when she was about 8 she started with her stomach after she ate, it got worse and since going to high school they just put it down to Irritable bowel syndrome affected by the stress off school and work. She has missed so much school in the last year and a half because off her health.

As for my understanding of CF i was under the impression that if you had it, you were born with it and you would KNOW you had it. No way could it go undetected so untill yesterday when we were at the hospital, it never crossed my mind. Since Early november, my daughter had been coughing alot, they changed her inhalers which didnt help, she then took what we were told was a viral bug and the dr didnt want to give her antibiotics, few weeks later she was still coughing and chesty, so gives her antiobiotics, 3 weeks after that another course of antibiotics at which point she was feeling slightly better but very run down, however on xmas eve she took unwell again, really tired, lack off interest in everything, coughing and no appetite what so ever....and was like that for 2 weeks, dr said to ride it out. Eventually went back to dr after she was in so much pain in her back, they eventually sent her for an xray which showed pneumonia on her right lung. Yesterday we attended an appointment where they told me how to help dislodge the mucus, and have taken bloody tests and asked loads off questions about her health history...the first time that ive felt anyone take a look at her health as a whole and not just the individual problems and when i looked up CF its the only thing that has listed every single problem she has had in the past.

Ive seen there are people here who were diagnosed with CF later on, in or round about their teends. I would be really interested to hear what brought you to being diagnosed and what your health was like beforehand. I guess i am still in shock and although we dont have a positive diagnosis yet, i have a horrible feeling its just a matter off time. I have no idea what that means for my daughter, i havent even looked at that side off it. Any help and advice or stories that anyone would like to share with me would be truely appreciated.

Sorry if this seems a bit hectic and rambled, i dont seem to be functioning very well at the moment, my thoughts are everywhere! so my apologies.

Kind regards
Lisa
daughter rhianne, who is 14 years old and she has a sister, Regan, who is 11yrs old.
 

Destiny4Always

New member
Hi everyone, my daughter is 14 and has just been told she has pneumonia in her right lung, and has just had bloods taken, to test for what i am not sure although after reading up on CF after the pediatrician mentioned it i have realised just how her health slots in to this illness or disease.
<br />
<br />She has always had problems with phlem and her chest, when she was born i put it down to them not sucking out all the fluid from her lungs. At 6 weeks old she was in hospital with a respiritory bug, then again at 6 months for a gastrointestinal bug. Since then she has coughed and most of her way through till now, she's had earache after earache, grommits in the ears and has always sounded blocked up, wheezy but never had an asthma attack. Then when she was about 8 she started with her stomach after she ate, it got worse and since going to high school they just put it down to Irritable bowel syndrome affected by the stress off school and work. She has missed so much school in the last year and a half because off her health.
<br />
<br />As for my understanding of CF i was under the impression that if you had it, you were born with it and you would KNOW you had it. No way could it go undetected so untill yesterday when we were at the hospital, it never crossed my mind. Since Early november, my daughter had been coughing alot, they changed her inhalers which didnt help, she then took what we were told was a viral bug and the dr didnt want to give her antibiotics, few weeks later she was still coughing and chesty, so gives her antiobiotics, 3 weeks after that another course of antibiotics at which point she was feeling slightly better but very run down, however on xmas eve she took unwell again, really tired, lack off interest in everything, coughing and no appetite what so ever....and was like that for 2 weeks, dr said to ride it out. Eventually went back to dr after she was in so much pain in her back, they eventually sent her for an xray which showed pneumonia on her right lung. Yesterday we attended an appointment where they told me how to help dislodge the mucus, and have taken bloody tests and asked loads off questions about her health history...the first time that ive felt anyone take a look at her health as a whole and not just the individual problems and when i looked up CF its the only thing that has listed every single problem she has had in the past.
<br />
<br />Ive seen there are people here who were diagnosed with CF later on, in or round about their teends. I would be really interested to hear what brought you to being diagnosed and what your health was like beforehand. I guess i am still in shock and although we dont have a positive diagnosis yet, i have a horrible feeling its just a matter off time. I have no idea what that means for my daughter, i havent even looked at that side off it. Any help and advice or stories that anyone would like to share with me would be truely appreciated.
<br />
<br />Sorry if this seems a bit hectic and rambled, i dont seem to be functioning very well at the moment, my thoughts are everywhere! so my apologies.
<br />
<br />Kind regards
<br />Lisa
<br />daughter rhianne, who is 14 years old and she has a sister, Regan, who is 11yrs old.
 
M

marcijo

Guest
Hi Lisa-
I am one of the people diagnosed later in life-I was diagnosed at age 21. I have 35 now and doing very well (at last check-my lung function was 101%). I was diagnosed because I got sick with walking pneumonia and my doctors wanted to figure out why. They tested me for TB (negative) and then did a sweat test for CF that came back borderline. They then did the full genetic panel genetic testing for CF and bingo-we found out I had CF. Talk about a shock!

It has been 14 years (almost 15) since then and I can honestly say if she does have CF-you are much better knowing it so you can get her on treatments. Right now my treatments are mainly preventative meds - and oral antibiotics when I get sick. I have only ever had to be on IV meds once-and that was because I was pregnant and the oral form wasn't safe. The preventative meds have helped to increase my lung function (about 5 years ago my FEV1 was at 58% - now its 101%!).

Good luck! Please check back and let us know how she is doing and what you find out.
 
M

marcijo

Guest
Hi Lisa-
I am one of the people diagnosed later in life-I was diagnosed at age 21. I have 35 now and doing very well (at last check-my lung function was 101%). I was diagnosed because I got sick with walking pneumonia and my doctors wanted to figure out why. They tested me for TB (negative) and then did a sweat test for CF that came back borderline. They then did the full genetic panel genetic testing for CF and bingo-we found out I had CF. Talk about a shock!

It has been 14 years (almost 15) since then and I can honestly say if she does have CF-you are much better knowing it so you can get her on treatments. Right now my treatments are mainly preventative meds - and oral antibiotics when I get sick. I have only ever had to be on IV meds once-and that was because I was pregnant and the oral form wasn't safe. The preventative meds have helped to increase my lung function (about 5 years ago my FEV1 was at 58% - now its 101%!).

Good luck! Please check back and let us know how she is doing and what you find out.
 
M

marcijo

Guest
Hi Lisa-
I am one of the people diagnosed later in life-I was diagnosed at age 21. I have 35 now and doing very well (at last check-my lung function was 101%). I was diagnosed because I got sick with walking pneumonia and my doctors wanted to figure out why. They tested me for TB (negative) and then did a sweat test for CF that came back borderline. They then did the full genetic panel genetic testing for CF and bingo-we found out I had CF. Talk about a shock!

It has been 14 years (almost 15) since then and I can honestly say if she does have CF-you are much better knowing it so you can get her on treatments. Right now my treatments are mainly preventative meds - and oral antibiotics when I get sick. I have only ever had to be on IV meds once-and that was because I was pregnant and the oral form wasn't safe. The preventative meds have helped to increase my lung function (about 5 years ago my FEV1 was at 58% - now its 101%!).

Good luck! Please check back and let us know how she is doing and what you find out.
 
M

marcijo

Guest
Hi Lisa-
I am one of the people diagnosed later in life-I was diagnosed at age 21. I have 35 now and doing very well (at last check-my lung function was 101%). I was diagnosed because I got sick with walking pneumonia and my doctors wanted to figure out why. They tested me for TB (negative) and then did a sweat test for CF that came back borderline. They then did the full genetic panel genetic testing for CF and bingo-we found out I had CF. Talk about a shock!

It has been 14 years (almost 15) since then and I can honestly say if she does have CF-you are much better knowing it so you can get her on treatments. Right now my treatments are mainly preventative meds - and oral antibiotics when I get sick. I have only ever had to be on IV meds once-and that was because I was pregnant and the oral form wasn't safe. The preventative meds have helped to increase my lung function (about 5 years ago my FEV1 was at 58% - now its 101%!).

Good luck! Please check back and let us know how she is doing and what you find out.
 
M

marcijo

Guest
Hi Lisa-
<br />I am one of the people diagnosed later in life-I was diagnosed at age 21. I have 35 now and doing very well (at last check-my lung function was 101%). I was diagnosed because I got sick with walking pneumonia and my doctors wanted to figure out why. They tested me for TB (negative) and then did a sweat test for CF that came back borderline. They then did the full genetic panel genetic testing for CF and bingo-we found out I had CF. Talk about a shock!
<br />
<br />It has been 14 years (almost 15) since then and I can honestly say if she does have CF-you are much better knowing it so you can get her on treatments. Right now my treatments are mainly preventative meds - and oral antibiotics when I get sick. I have only ever had to be on IV meds once-and that was because I was pregnant and the oral form wasn't safe. The preventative meds have helped to increase my lung function (about 5 years ago my FEV1 was at 58% - now its 101%!).
<br />
<br />Good luck! Please check back and let us know how she is doing and what you find out.
 

Destiny4Always

New member
Thank you very much for taking the time to reply, i truely appreciate it, and helps put my mind at rest, i am so worried at the moment i can hardly function i just feel like curling in to a small ball and forgetting the world outside.
Rhianne only managed just over half a day at school yesterday ( wednesday) and she is off today and even at 2.13pm is still in bed exhausted. It worries me to see her like this, and all the waiting to find out exactly what it is, is so hard. I'm not sure what is worse, the waiting to find out if Cf is what she has, or if the final diagnosis will be the most difficult, in one way at least i will know whats wrong and it can be treated.

It gives me great hope to hear from yourself and people who were also diagnosed later in life, and to know that with treatment she can lead a reasonably normal life. I guess from my point off view as a parent, i feel terrible because it will have been my genes that made her this way, and that makes me feel guilty. But on the other side, i know that if she is diagnosed with CF it will answer alot off questions regarding her past health, and maybe help us to move on and deal with it.

Thanks again marci for taking the time to reply, i appreciate you help.

Lisa xxxxx
 

Destiny4Always

New member
Thank you very much for taking the time to reply, i truely appreciate it, and helps put my mind at rest, i am so worried at the moment i can hardly function i just feel like curling in to a small ball and forgetting the world outside.
Rhianne only managed just over half a day at school yesterday ( wednesday) and she is off today and even at 2.13pm is still in bed exhausted. It worries me to see her like this, and all the waiting to find out exactly what it is, is so hard. I'm not sure what is worse, the waiting to find out if Cf is what she has, or if the final diagnosis will be the most difficult, in one way at least i will know whats wrong and it can be treated.

It gives me great hope to hear from yourself and people who were also diagnosed later in life, and to know that with treatment she can lead a reasonably normal life. I guess from my point off view as a parent, i feel terrible because it will have been my genes that made her this way, and that makes me feel guilty. But on the other side, i know that if she is diagnosed with CF it will answer alot off questions regarding her past health, and maybe help us to move on and deal with it.

Thanks again marci for taking the time to reply, i appreciate you help.

Lisa xxxxx
 

Destiny4Always

New member
Thank you very much for taking the time to reply, i truely appreciate it, and helps put my mind at rest, i am so worried at the moment i can hardly function i just feel like curling in to a small ball and forgetting the world outside.
Rhianne only managed just over half a day at school yesterday ( wednesday) and she is off today and even at 2.13pm is still in bed exhausted. It worries me to see her like this, and all the waiting to find out exactly what it is, is so hard. I'm not sure what is worse, the waiting to find out if Cf is what she has, or if the final diagnosis will be the most difficult, in one way at least i will know whats wrong and it can be treated.

It gives me great hope to hear from yourself and people who were also diagnosed later in life, and to know that with treatment she can lead a reasonably normal life. I guess from my point off view as a parent, i feel terrible because it will have been my genes that made her this way, and that makes me feel guilty. But on the other side, i know that if she is diagnosed with CF it will answer alot off questions regarding her past health, and maybe help us to move on and deal with it.

Thanks again marci for taking the time to reply, i appreciate you help.

Lisa xxxxx
 

Destiny4Always

New member
Thank you very much for taking the time to reply, i truely appreciate it, and helps put my mind at rest, i am so worried at the moment i can hardly function i just feel like curling in to a small ball and forgetting the world outside.
Rhianne only managed just over half a day at school yesterday ( wednesday) and she is off today and even at 2.13pm is still in bed exhausted. It worries me to see her like this, and all the waiting to find out exactly what it is, is so hard. I'm not sure what is worse, the waiting to find out if Cf is what she has, or if the final diagnosis will be the most difficult, in one way at least i will know whats wrong and it can be treated.

It gives me great hope to hear from yourself and people who were also diagnosed later in life, and to know that with treatment she can lead a reasonably normal life. I guess from my point off view as a parent, i feel terrible because it will have been my genes that made her this way, and that makes me feel guilty. But on the other side, i know that if she is diagnosed with CF it will answer alot off questions regarding her past health, and maybe help us to move on and deal with it.

Thanks again marci for taking the time to reply, i appreciate you help.

Lisa xxxxx
 

Destiny4Always

New member
Thank you very much for taking the time to reply, i truely appreciate it, and helps put my mind at rest, i am so worried at the moment i can hardly function i just feel like curling in to a small ball and forgetting the world outside.
<br />Rhianne only managed just over half a day at school yesterday ( wednesday) and she is off today and even at 2.13pm is still in bed exhausted. It worries me to see her like this, and all the waiting to find out exactly what it is, is so hard. I'm not sure what is worse, the waiting to find out if Cf is what she has, or if the final diagnosis will be the most difficult, in one way at least i will know whats wrong and it can be treated.
<br />
<br />It gives me great hope to hear from yourself and people who were also diagnosed later in life, and to know that with treatment she can lead a reasonably normal life. I guess from my point off view as a parent, i feel terrible because it will have been my genes that made her this way, and that makes me feel guilty. But on the other side, i know that if she is diagnosed with CF it will answer alot off questions regarding her past health, and maybe help us to move on and deal with it.
<br />
<br />Thanks again marci for taking the time to reply, i appreciate you help.
<br />
<br />Lisa xxxxx
 
M

marcijo

Guest
No problem-glad I could help! You may want to post this in the adults section for the familes section as well-I am sure you will recieve more answers there.
 
M

marcijo

Guest
No problem-glad I could help! You may want to post this in the adults section for the familes section as well-I am sure you will recieve more answers there.
 
M

marcijo

Guest
No problem-glad I could help! You may want to post this in the adults section for the familes section as well-I am sure you will recieve more answers there.
 
M

marcijo

Guest
No problem-glad I could help! You may want to post this in the adults section for the familes section as well-I am sure you will recieve more answers there.
 
M

marcijo

Guest
No problem-glad I could help! You may want to post this in the adults section for the familes section as well-I am sure you will recieve more answers there.
 
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