Worried about my 14yr old daughter and possible CF diagnosis

Destiny4Always

New member
Hi there, some off you may have read my post which i started in the teends section, because my teen is the one i am concerned with but marci suggested i come here incase more people will see it and be able to help.

I will appologise now for any rambling and if i dont make sense, i am so anxious i cant seem to function properly.
My daughter who is now 14, was born 2 weeks premature, was hospitalised at 6 weeks old for a bronchial infection, and again at 6 months for a ghastro virus. I have been questioning her chest sounding different since the day she was born,wondering if she was asthmatic, which they eventually diagnosed a few years ago, inhalers have not made a difference to her coughing, and more recently she has missed so much school due to dizzy spells or shaking spells and feeling faint, along with stomach pain...a pediatritian had a look and after speaking with her twice, but it down to stress related issues. ( which apparently were an issue even at 9/10yrs old)

anyway in nov 2009 she took what we thought was a viral bug, doctor told us to wait, no a/b's but did change her inhaler, 3 weeks later back to him again, he gave her a/bs as she was still coughing badly, and 3 weeks after that gave her a 2nd course of a/bs which brought us to xmas time, she still wasnt right, and coughing, then on xmas even she took really bad, another virus we thought, so waited it out, painkillers etc and taking it easy, spoilt her xmas as she was so very lethargic she spent the whole time in bed, which isnt like her even if ill...she was pastey white and in alot of pain...dr's said it was just from coughing and give it time to clear, eventually i'd had enough waiting and we went back...low and behold she was sent for an xray and it showed she had pneumonia in her right lung, the bottom part of the lung having collapsed and shrivelled up they said, They kept asking if it was possible she had inhaled a peanut...we didnt think so.
They gave her more a/b's stronger this time, and she has now had a weeks worth, she has seen someone at the hospital who took a health history and blood was taken which ive just found out today that it came back ok for anemia, negative for glandular fever, she had inflamation but they couldnt grow cultures from the swabs taken from her throat. ( i have no idea what any of this means whether its good or bad) they doctor asked there was any CF in the family history, there isnt, and up till he mentioned it i would never in a million years have considered it as far as i was aware CF was something u were born with and were diagnosed with it right away. I was so worried i got on here and other sites to have a look at what CF is and what it can do...and i had no idea!! and the bit that made me feel really bad was that most of the symptoms i read off CF are what rhianne has experienced in the past 14 years.

Now i am left with a 6 week wait, which is how long they said to wait and they will send me an appointment to do another xray. the doctors dont seem to be very forthcoming on telling us everything is ok, and even today i felt when he asked " WHAT DID THEY TELL U AT THE HOSPITAL" it was because he didnt wanat to mention stuff incase we hadnt been told. so of course i get even more worried.

Is this a typical case off how folk find out in later life? should i wait the 6 weeks,(which i dont think i can - i am so worried) i just want to know one way or the other...am i just jumping the gun and getting overly worried for nothing? or should i be taking charge and telling them i want something done sooner which can tell me one way or another if this is CF. I dont want them to think i am just an overly protective mother, but i feel the sooner we know for the best, the better.

I sit trying not to overthink it, i try to deny the fact its happening and already i feel i have lost touch with reality at the moment, because its continually there in the back off my mind and when i do just get my mind off it, all i need to do is take one look at rhianne my daughter and her pale complexion and the dark circles under her eyes and all my worries and cocerns come flooding back again
I would really appreciate peoples oppinion.
 

Destiny4Always

New member
Hi there, some off you may have read my post which i started in the teends section, because my teen is the one i am concerned with but marci suggested i come here incase more people will see it and be able to help.

I will appologise now for any rambling and if i dont make sense, i am so anxious i cant seem to function properly.
My daughter who is now 14, was born 2 weeks premature, was hospitalised at 6 weeks old for a bronchial infection, and again at 6 months for a ghastro virus. I have been questioning her chest sounding different since the day she was born,wondering if she was asthmatic, which they eventually diagnosed a few years ago, inhalers have not made a difference to her coughing, and more recently she has missed so much school due to dizzy spells or shaking spells and feeling faint, along with stomach pain...a pediatritian had a look and after speaking with her twice, but it down to stress related issues. ( which apparently were an issue even at 9/10yrs old)

anyway in nov 2009 she took what we thought was a viral bug, doctor told us to wait, no a/b's but did change her inhaler, 3 weeks later back to him again, he gave her a/bs as she was still coughing badly, and 3 weeks after that gave her a 2nd course of a/bs which brought us to xmas time, she still wasnt right, and coughing, then on xmas even she took really bad, another virus we thought, so waited it out, painkillers etc and taking it easy, spoilt her xmas as she was so very lethargic she spent the whole time in bed, which isnt like her even if ill...she was pastey white and in alot of pain...dr's said it was just from coughing and give it time to clear, eventually i'd had enough waiting and we went back...low and behold she was sent for an xray and it showed she had pneumonia in her right lung, the bottom part of the lung having collapsed and shrivelled up they said, They kept asking if it was possible she had inhaled a peanut...we didnt think so.
They gave her more a/b's stronger this time, and she has now had a weeks worth, she has seen someone at the hospital who took a health history and blood was taken which ive just found out today that it came back ok for anemia, negative for glandular fever, she had inflamation but they couldnt grow cultures from the swabs taken from her throat. ( i have no idea what any of this means whether its good or bad) they doctor asked there was any CF in the family history, there isnt, and up till he mentioned it i would never in a million years have considered it as far as i was aware CF was something u were born with and were diagnosed with it right away. I was so worried i got on here and other sites to have a look at what CF is and what it can do...and i had no idea!! and the bit that made me feel really bad was that most of the symptoms i read off CF are what rhianne has experienced in the past 14 years.

Now i am left with a 6 week wait, which is how long they said to wait and they will send me an appointment to do another xray. the doctors dont seem to be very forthcoming on telling us everything is ok, and even today i felt when he asked " WHAT DID THEY TELL U AT THE HOSPITAL" it was because he didnt wanat to mention stuff incase we hadnt been told. so of course i get even more worried.

Is this a typical case off how folk find out in later life? should i wait the 6 weeks,(which i dont think i can - i am so worried) i just want to know one way or the other...am i just jumping the gun and getting overly worried for nothing? or should i be taking charge and telling them i want something done sooner which can tell me one way or another if this is CF. I dont want them to think i am just an overly protective mother, but i feel the sooner we know for the best, the better.

I sit trying not to overthink it, i try to deny the fact its happening and already i feel i have lost touch with reality at the moment, because its continually there in the back off my mind and when i do just get my mind off it, all i need to do is take one look at rhianne my daughter and her pale complexion and the dark circles under her eyes and all my worries and cocerns come flooding back again
I would really appreciate peoples oppinion.
 

Destiny4Always

New member
Hi there, some off you may have read my post which i started in the teends section, because my teen is the one i am concerned with but marci suggested i come here incase more people will see it and be able to help.

I will appologise now for any rambling and if i dont make sense, i am so anxious i cant seem to function properly.
My daughter who is now 14, was born 2 weeks premature, was hospitalised at 6 weeks old for a bronchial infection, and again at 6 months for a ghastro virus. I have been questioning her chest sounding different since the day she was born,wondering if she was asthmatic, which they eventually diagnosed a few years ago, inhalers have not made a difference to her coughing, and more recently she has missed so much school due to dizzy spells or shaking spells and feeling faint, along with stomach pain...a pediatritian had a look and after speaking with her twice, but it down to stress related issues. ( which apparently were an issue even at 9/10yrs old)

anyway in nov 2009 she took what we thought was a viral bug, doctor told us to wait, no a/b's but did change her inhaler, 3 weeks later back to him again, he gave her a/bs as she was still coughing badly, and 3 weeks after that gave her a 2nd course of a/bs which brought us to xmas time, she still wasnt right, and coughing, then on xmas even she took really bad, another virus we thought, so waited it out, painkillers etc and taking it easy, spoilt her xmas as she was so very lethargic she spent the whole time in bed, which isnt like her even if ill...she was pastey white and in alot of pain...dr's said it was just from coughing and give it time to clear, eventually i'd had enough waiting and we went back...low and behold she was sent for an xray and it showed she had pneumonia in her right lung, the bottom part of the lung having collapsed and shrivelled up they said, They kept asking if it was possible she had inhaled a peanut...we didnt think so.
They gave her more a/b's stronger this time, and she has now had a weeks worth, she has seen someone at the hospital who took a health history and blood was taken which ive just found out today that it came back ok for anemia, negative for glandular fever, she had inflamation but they couldnt grow cultures from the swabs taken from her throat. ( i have no idea what any of this means whether its good or bad) they doctor asked there was any CF in the family history, there isnt, and up till he mentioned it i would never in a million years have considered it as far as i was aware CF was something u were born with and were diagnosed with it right away. I was so worried i got on here and other sites to have a look at what CF is and what it can do...and i had no idea!! and the bit that made me feel really bad was that most of the symptoms i read off CF are what rhianne has experienced in the past 14 years.

Now i am left with a 6 week wait, which is how long they said to wait and they will send me an appointment to do another xray. the doctors dont seem to be very forthcoming on telling us everything is ok, and even today i felt when he asked " WHAT DID THEY TELL U AT THE HOSPITAL" it was because he didnt wanat to mention stuff incase we hadnt been told. so of course i get even more worried.

Is this a typical case off how folk find out in later life? should i wait the 6 weeks,(which i dont think i can - i am so worried) i just want to know one way or the other...am i just jumping the gun and getting overly worried for nothing? or should i be taking charge and telling them i want something done sooner which can tell me one way or another if this is CF. I dont want them to think i am just an overly protective mother, but i feel the sooner we know for the best, the better.

I sit trying not to overthink it, i try to deny the fact its happening and already i feel i have lost touch with reality at the moment, because its continually there in the back off my mind and when i do just get my mind off it, all i need to do is take one look at rhianne my daughter and her pale complexion and the dark circles under her eyes and all my worries and cocerns come flooding back again
I would really appreciate peoples oppinion.
 

Destiny4Always

New member
Hi there, some off you may have read my post which i started in the teends section, because my teen is the one i am concerned with but marci suggested i come here incase more people will see it and be able to help.

I will appologise now for any rambling and if i dont make sense, i am so anxious i cant seem to function properly.
My daughter who is now 14, was born 2 weeks premature, was hospitalised at 6 weeks old for a bronchial infection, and again at 6 months for a ghastro virus. I have been questioning her chest sounding different since the day she was born,wondering if she was asthmatic, which they eventually diagnosed a few years ago, inhalers have not made a difference to her coughing, and more recently she has missed so much school due to dizzy spells or shaking spells and feeling faint, along with stomach pain...a pediatritian had a look and after speaking with her twice, but it down to stress related issues. ( which apparently were an issue even at 9/10yrs old)

anyway in nov 2009 she took what we thought was a viral bug, doctor told us to wait, no a/b's but did change her inhaler, 3 weeks later back to him again, he gave her a/bs as she was still coughing badly, and 3 weeks after that gave her a 2nd course of a/bs which brought us to xmas time, she still wasnt right, and coughing, then on xmas even she took really bad, another virus we thought, so waited it out, painkillers etc and taking it easy, spoilt her xmas as she was so very lethargic she spent the whole time in bed, which isnt like her even if ill...she was pastey white and in alot of pain...dr's said it was just from coughing and give it time to clear, eventually i'd had enough waiting and we went back...low and behold she was sent for an xray and it showed she had pneumonia in her right lung, the bottom part of the lung having collapsed and shrivelled up they said, They kept asking if it was possible she had inhaled a peanut...we didnt think so.
They gave her more a/b's stronger this time, and she has now had a weeks worth, she has seen someone at the hospital who took a health history and blood was taken which ive just found out today that it came back ok for anemia, negative for glandular fever, she had inflamation but they couldnt grow cultures from the swabs taken from her throat. ( i have no idea what any of this means whether its good or bad) they doctor asked there was any CF in the family history, there isnt, and up till he mentioned it i would never in a million years have considered it as far as i was aware CF was something u were born with and were diagnosed with it right away. I was so worried i got on here and other sites to have a look at what CF is and what it can do...and i had no idea!! and the bit that made me feel really bad was that most of the symptoms i read off CF are what rhianne has experienced in the past 14 years.

Now i am left with a 6 week wait, which is how long they said to wait and they will send me an appointment to do another xray. the doctors dont seem to be very forthcoming on telling us everything is ok, and even today i felt when he asked " WHAT DID THEY TELL U AT THE HOSPITAL" it was because he didnt wanat to mention stuff incase we hadnt been told. so of course i get even more worried.

Is this a typical case off how folk find out in later life? should i wait the 6 weeks,(which i dont think i can - i am so worried) i just want to know one way or the other...am i just jumping the gun and getting overly worried for nothing? or should i be taking charge and telling them i want something done sooner which can tell me one way or another if this is CF. I dont want them to think i am just an overly protective mother, but i feel the sooner we know for the best, the better.

I sit trying not to overthink it, i try to deny the fact its happening and already i feel i have lost touch with reality at the moment, because its continually there in the back off my mind and when i do just get my mind off it, all i need to do is take one look at rhianne my daughter and her pale complexion and the dark circles under her eyes and all my worries and cocerns come flooding back again
I would really appreciate peoples oppinion.
 

Destiny4Always

New member
Hi there, some off you may have read my post which i started in the teends section, because my teen is the one i am concerned with but marci suggested i come here incase more people will see it and be able to help.
<br />
<br />I will appologise now for any rambling and if i dont make sense, i am so anxious i cant seem to function properly.
<br />My daughter who is now 14, was born 2 weeks premature, was hospitalised at 6 weeks old for a bronchial infection, and again at 6 months for a ghastro virus. I have been questioning her chest sounding different since the day she was born,wondering if she was asthmatic, which they eventually diagnosed a few years ago, inhalers have not made a difference to her coughing, and more recently she has missed so much school due to dizzy spells or shaking spells and feeling faint, along with stomach pain...a pediatritian had a look and after speaking with her twice, but it down to stress related issues. ( which apparently were an issue even at 9/10yrs old)
<br />
<br />anyway in nov 2009 she took what we thought was a viral bug, doctor told us to wait, no a/b's but did change her inhaler, 3 weeks later back to him again, he gave her a/bs as she was still coughing badly, and 3 weeks after that gave her a 2nd course of a/bs which brought us to xmas time, she still wasnt right, and coughing, then on xmas even she took really bad, another virus we thought, so waited it out, painkillers etc and taking it easy, spoilt her xmas as she was so very lethargic she spent the whole time in bed, which isnt like her even if ill...she was pastey white and in alot of pain...dr's said it was just from coughing and give it time to clear, eventually i'd had enough waiting and we went back...low and behold she was sent for an xray and it showed she had pneumonia in her right lung, the bottom part of the lung having collapsed and shrivelled up they said, They kept asking if it was possible she had inhaled a peanut...we didnt think so.
<br />They gave her more a/b's stronger this time, and she has now had a weeks worth, she has seen someone at the hospital who took a health history and blood was taken which ive just found out today that it came back ok for anemia, negative for glandular fever, she had inflamation but they couldnt grow cultures from the swabs taken from her throat. ( i have no idea what any of this means whether its good or bad) they doctor asked there was any CF in the family history, there isnt, and up till he mentioned it i would never in a million years have considered it as far as i was aware CF was something u were born with and were diagnosed with it right away. I was so worried i got on here and other sites to have a look at what CF is and what it can do...and i had no idea!! and the bit that made me feel really bad was that most of the symptoms i read off CF are what rhianne has experienced in the past 14 years.
<br />
<br />Now i am left with a 6 week wait, which is how long they said to wait and they will send me an appointment to do another xray. the doctors dont seem to be very forthcoming on telling us everything is ok, and even today i felt when he asked " WHAT DID THEY TELL U AT THE HOSPITAL" it was because he didnt wanat to mention stuff incase we hadnt been told. so of course i get even more worried.
<br />
<br />Is this a typical case off how folk find out in later life? should i wait the 6 weeks,(which i dont think i can - i am so worried) i just want to know one way or the other...am i just jumping the gun and getting overly worried for nothing? or should i be taking charge and telling them i want something done sooner which can tell me one way or another if this is CF. I dont want them to think i am just an overly protective mother, but i feel the sooner we know for the best, the better.
<br />
<br />I sit trying not to overthink it, i try to deny the fact its happening and already i feel i have lost touch with reality at the moment, because its continually there in the back off my mind and when i do just get my mind off it, all i need to do is take one look at rhianne my daughter and her pale complexion and the dark circles under her eyes and all my worries and cocerns come flooding back again
<br /> I would really appreciate peoples oppinion.
 
M

Mommafirst

Guest
I think her symptoms definitely warrant further investigating. If I were you, I'd ask for a referral to the nearest CFF accredited CF center (click on find a center up top to see which one you should ask for). From all I've read and from my own experiences, pediatricians and ER doctors know VERY LITTLE about CF, CF protocol and CF diagnosis. Go to a CF specialist and begin the testing. Her X-ray and history are all very indicative of CF. I know you don't want it to be CF, but if it is, then you can really help her a great deal.

Best of luck!!!
 
M

Mommafirst

Guest
I think her symptoms definitely warrant further investigating. If I were you, I'd ask for a referral to the nearest CFF accredited CF center (click on find a center up top to see which one you should ask for). From all I've read and from my own experiences, pediatricians and ER doctors know VERY LITTLE about CF, CF protocol and CF diagnosis. Go to a CF specialist and begin the testing. Her X-ray and history are all very indicative of CF. I know you don't want it to be CF, but if it is, then you can really help her a great deal.

Best of luck!!!
 
M

Mommafirst

Guest
I think her symptoms definitely warrant further investigating. If I were you, I'd ask for a referral to the nearest CFF accredited CF center (click on find a center up top to see which one you should ask for). From all I've read and from my own experiences, pediatricians and ER doctors know VERY LITTLE about CF, CF protocol and CF diagnosis. Go to a CF specialist and begin the testing. Her X-ray and history are all very indicative of CF. I know you don't want it to be CF, but if it is, then you can really help her a great deal.

Best of luck!!!
 
M

Mommafirst

Guest
I think her symptoms definitely warrant further investigating. If I were you, I'd ask for a referral to the nearest CFF accredited CF center (click on find a center up top to see which one you should ask for). From all I've read and from my own experiences, pediatricians and ER doctors know VERY LITTLE about CF, CF protocol and CF diagnosis. Go to a CF specialist and begin the testing. Her X-ray and history are all very indicative of CF. I know you don't want it to be CF, but if it is, then you can really help her a great deal.

Best of luck!!!
 
M

Mommafirst

Guest
I think her symptoms definitely warrant further investigating. If I were you, I'd ask for a referral to the nearest CFF accredited CF center (click on find a center up top to see which one you should ask for). From all I've read and from my own experiences, pediatricians and ER doctors know VERY LITTLE about CF, CF protocol and CF diagnosis. Go to a CF specialist and begin the testing. Her X-ray and history are all very indicative of CF. I know you don't want it to be CF, but if it is, then you can really help her a great deal.
<br />
<br />Best of luck!!!
 

JORDYSMOM

New member
Hi & welcome. I'm just so sorry you are going through this. I know it's scary, and you must feel so helpless to make your daughter better.

My son was diagnosed with CF at 15 yrs. old. We went through some similar experiences over the years. I know how frustrating it is to feel that there's something being missed, but being told you are over-reacting, or looking for trouble.

See if you need a referral to take your daughter to a Certified CF center. If you do, push your doctor for it, and if he/she won't give it to you, ask for their denial of it to be put in your daughter's file, and then find a doctor who will refer you.

If you cannot get into a CF clinic, find a doc who will order an Ambry Amplified Genetic test. Any doctor can order it, and you simply need to have blood drawn & sent in to be checked for all known mutations that cause CF. There are over 1500, so make sure you ask for the Amplified test.

I really hope your daughter doesn't have CF, but I think there are enough red flags here to check for it, and rule it out if nothing else. I hope you can find the answers you need to help your daughter. Please keep us posted.

Stacey

edited to add: I know a lot of doctors will tell you that if it was CF, you'd have known by now. They may say her symptoms are not severe enough to be CF, but that simply isn't true. We have new members here all of the time who have been diagnosed in their teens, twenties and beyond. CF presents itself differently in each patient. Some go for years without any symptoms, but it is a progressive disease, and it needs to be aggressively & proactively treated.
 

JORDYSMOM

New member
Hi & welcome. I'm just so sorry you are going through this. I know it's scary, and you must feel so helpless to make your daughter better.

My son was diagnosed with CF at 15 yrs. old. We went through some similar experiences over the years. I know how frustrating it is to feel that there's something being missed, but being told you are over-reacting, or looking for trouble.

See if you need a referral to take your daughter to a Certified CF center. If you do, push your doctor for it, and if he/she won't give it to you, ask for their denial of it to be put in your daughter's file, and then find a doctor who will refer you.

If you cannot get into a CF clinic, find a doc who will order an Ambry Amplified Genetic test. Any doctor can order it, and you simply need to have blood drawn & sent in to be checked for all known mutations that cause CF. There are over 1500, so make sure you ask for the Amplified test.

I really hope your daughter doesn't have CF, but I think there are enough red flags here to check for it, and rule it out if nothing else. I hope you can find the answers you need to help your daughter. Please keep us posted.

Stacey

edited to add: I know a lot of doctors will tell you that if it was CF, you'd have known by now. They may say her symptoms are not severe enough to be CF, but that simply isn't true. We have new members here all of the time who have been diagnosed in their teens, twenties and beyond. CF presents itself differently in each patient. Some go for years without any symptoms, but it is a progressive disease, and it needs to be aggressively & proactively treated.
 

JORDYSMOM

New member
Hi & welcome. I'm just so sorry you are going through this. I know it's scary, and you must feel so helpless to make your daughter better.

My son was diagnosed with CF at 15 yrs. old. We went through some similar experiences over the years. I know how frustrating it is to feel that there's something being missed, but being told you are over-reacting, or looking for trouble.

See if you need a referral to take your daughter to a Certified CF center. If you do, push your doctor for it, and if he/she won't give it to you, ask for their denial of it to be put in your daughter's file, and then find a doctor who will refer you.

If you cannot get into a CF clinic, find a doc who will order an Ambry Amplified Genetic test. Any doctor can order it, and you simply need to have blood drawn & sent in to be checked for all known mutations that cause CF. There are over 1500, so make sure you ask for the Amplified test.

I really hope your daughter doesn't have CF, but I think there are enough red flags here to check for it, and rule it out if nothing else. I hope you can find the answers you need to help your daughter. Please keep us posted.

Stacey

edited to add: I know a lot of doctors will tell you that if it was CF, you'd have known by now. They may say her symptoms are not severe enough to be CF, but that simply isn't true. We have new members here all of the time who have been diagnosed in their teens, twenties and beyond. CF presents itself differently in each patient. Some go for years without any symptoms, but it is a progressive disease, and it needs to be aggressively & proactively treated.
 

JORDYSMOM

New member
Hi & welcome. I'm just so sorry you are going through this. I know it's scary, and you must feel so helpless to make your daughter better.

My son was diagnosed with CF at 15 yrs. old. We went through some similar experiences over the years. I know how frustrating it is to feel that there's something being missed, but being told you are over-reacting, or looking for trouble.

See if you need a referral to take your daughter to a Certified CF center. If you do, push your doctor for it, and if he/she won't give it to you, ask for their denial of it to be put in your daughter's file, and then find a doctor who will refer you.

If you cannot get into a CF clinic, find a doc who will order an Ambry Amplified Genetic test. Any doctor can order it, and you simply need to have blood drawn & sent in to be checked for all known mutations that cause CF. There are over 1500, so make sure you ask for the Amplified test.

I really hope your daughter doesn't have CF, but I think there are enough red flags here to check for it, and rule it out if nothing else. I hope you can find the answers you need to help your daughter. Please keep us posted.

Stacey

edited to add: I know a lot of doctors will tell you that if it was CF, you'd have known by now. They may say her symptoms are not severe enough to be CF, but that simply isn't true. We have new members here all of the time who have been diagnosed in their teens, twenties and beyond. CF presents itself differently in each patient. Some go for years without any symptoms, but it is a progressive disease, and it needs to be aggressively & proactively treated.
 

JORDYSMOM

New member
Hi & welcome. I'm just so sorry you are going through this. I know it's scary, and you must feel so helpless to make your daughter better.
<br />
<br />My son was diagnosed with CF at 15 yrs. old. We went through some similar experiences over the years. I know how frustrating it is to feel that there's something being missed, but being told you are over-reacting, or looking for trouble.
<br />
<br />See if you need a referral to take your daughter to a Certified CF center. If you do, push your doctor for it, and if he/she won't give it to you, ask for their denial of it to be put in your daughter's file, and then find a doctor who will refer you.
<br />
<br />If you cannot get into a CF clinic, find a doc who will order an Ambry Amplified Genetic test. Any doctor can order it, and you simply need to have blood drawn & sent in to be checked for all known mutations that cause CF. There are over 1500, so make sure you ask for the Amplified test.
<br />
<br />I really hope your daughter doesn't have CF, but I think there are enough red flags here to check for it, and rule it out if nothing else. I hope you can find the answers you need to help your daughter. Please keep us posted.
<br />
<br />Stacey
<br />
<br />edited to add: I know a lot of doctors will tell you that if it was CF, you'd have known by now. They may say her symptoms are not severe enough to be CF, but that simply isn't true. We have new members here all of the time who have been diagnosed in their teens, twenties and beyond. CF presents itself differently in each patient. Some go for years without any symptoms, but it is a progressive disease, and it needs to be aggressively & proactively treated.
 
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