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Boarderline
- Thread starter katie4byz
- Start date
How old is your son? Was the sweat test done at an accreditted CF facility? Does your child have symptons. Sometimes on teeny tiny babies, it's difficult to get a good sample.
DS' had his sweat test done when he was about 2-3 weeks old, at an accreditted CF center and it was a normal 32. He was born with a bowel obstruction due to meconium illeus and blood tests showed he did have cf.
DS' had his sweat test done when he was about 2-3 weeks old, at an accreditted CF center and it was a normal 32. He was born with a bowel obstruction due to meconium illeus and blood tests showed he did have cf.
How old is your son? Was the sweat test done at an accreditted CF facility? Does your child have symptons. Sometimes on teeny tiny babies, it's difficult to get a good sample.
DS' had his sweat test done when he was about 2-3 weeks old, at an accreditted CF center and it was a normal 32. He was born with a bowel obstruction due to meconium illeus and blood tests showed he did have cf.
DS' had his sweat test done when he was about 2-3 weeks old, at an accreditted CF center and it was a normal 32. He was born with a bowel obstruction due to meconium illeus and blood tests showed he did have cf.
I have borderline sweats (50 last time it was checked) and I have CF. There is always a possibility of CF even if the sweats aren't distinctly positive. I was finally diagnosed at 33, I am 40 now after years of symptoms. I hope the genetics can give you guys a more definitive answer. Mine showed a rare mutation and a polymorphism that was questionable, but due to all of my symptoms, I got a CF dx which opened up many new doors as far as treatments.
If it does turn out to be CF, then your son will get CF treatment that should help him.
I would go to an accredited CF center for a repeat sweat (if your local hosp isn't CF accredited) and see a pulmo there.
The waiting is the worst, hang in there.
Jenn 40 w/CF
If it does turn out to be CF, then your son will get CF treatment that should help him.
I would go to an accredited CF center for a repeat sweat (if your local hosp isn't CF accredited) and see a pulmo there.
The waiting is the worst, hang in there.
Jenn 40 w/CF
I have borderline sweats (50 last time it was checked) and I have CF. There is always a possibility of CF even if the sweats aren't distinctly positive. I was finally diagnosed at 33, I am 40 now after years of symptoms. I hope the genetics can give you guys a more definitive answer. Mine showed a rare mutation and a polymorphism that was questionable, but due to all of my symptoms, I got a CF dx which opened up many new doors as far as treatments.
If it does turn out to be CF, then your son will get CF treatment that should help him.
I would go to an accredited CF center for a repeat sweat (if your local hosp isn't CF accredited) and see a pulmo there.
The waiting is the worst, hang in there.
Jenn 40 w/CF
If it does turn out to be CF, then your son will get CF treatment that should help him.
I would go to an accredited CF center for a repeat sweat (if your local hosp isn't CF accredited) and see a pulmo there.
The waiting is the worst, hang in there.
Jenn 40 w/CF
Doctor said there is something which is one way round with the sodium or something for cf and not cf and my sons is the way round of non cf but with the chest problems they are looking into it more with bloods and the boarderline sweat test doctor said don't want to give a dx of cf as its to much of a label to carry if not 100% neccessary at the moment,
Thanks it is so hard as just want to know now either way.
Thanks it is so hard as just want to know now either way.
Doctor said there is something which is one way round with the sodium or something for cf and not cf and my sons is the way round of non cf but with the chest problems they are looking into it more with bloods and the boarderline sweat test doctor said don't want to give a dx of cf as its to much of a label to carry if not 100% neccessary at the moment,
Thanks it is so hard as just want to know now either way.
Thanks it is so hard as just want to know now either way.
Doctor said there is something which is one way round with the sodium or something for cf and not cf and my sons is the way round of non cf but with the chest problems they are looking into it more with bloods and the boarderline sweat test doctor said don't want to give a dx of cf as its to much of a label to carry if not 100% neccessary at the moment,
Thanks it is so hard as just want to know now either way.
Thanks it is so hard as just want to know now either way.
Doctor said there is something which is one way round with the sodium or something for cf and not cf and my sons is the way round of non cf but with the chest problems they are looking into it more with bloods and the boarderline sweat test doctor said don't want to give a dx of cf as its to much of a label to carry if not 100% neccessary at the moment,
Thanks it is so hard as just want to know now either way.
Thanks it is so hard as just want to know now either way.
Katie:
I'm sure that you like your Doctor alot but CF is not your everyday disease and it is unlikely that he/she is capable of making the diagnosis. If your son has CF and it remains undiagnosed and untreated, he can have ongoing and irreversable lung damage. At age 47 I had two "borderline" sweat teasts. I have been diagnosed at Massachusetts General Hospital and at Children's Hospital of Boston. This after 47 years of missed dx.
It is your call but because you came here for help I am going to be blunt with you. You can have a consultation with a CYSTIC FIBROSIS SPECIALIST at an APPROVED CF CENTER or you can do NOTHING. If you go to the CF Center and your son DOES NOT have CF, no problem. If you don't go to the CF Center and son has CF, nothing good can happen.
If your son has CF and it goes untreated, his life expectency is about 15 years.
Tell your Doctor that I said that.
Bill
I'm sure that you like your Doctor alot but CF is not your everyday disease and it is unlikely that he/she is capable of making the diagnosis. If your son has CF and it remains undiagnosed and untreated, he can have ongoing and irreversable lung damage. At age 47 I had two "borderline" sweat teasts. I have been diagnosed at Massachusetts General Hospital and at Children's Hospital of Boston. This after 47 years of missed dx.
It is your call but because you came here for help I am going to be blunt with you. You can have a consultation with a CYSTIC FIBROSIS SPECIALIST at an APPROVED CF CENTER or you can do NOTHING. If you go to the CF Center and your son DOES NOT have CF, no problem. If you don't go to the CF Center and son has CF, nothing good can happen.
If your son has CF and it goes untreated, his life expectency is about 15 years.
Tell your Doctor that I said that.
Bill
Katie:
I'm sure that you like your Doctor alot but CF is not your everyday disease and it is unlikely that he/she is capable of making the diagnosis. If your son has CF and it remains undiagnosed and untreated, he can have ongoing and irreversable lung damage. At age 47 I had two "borderline" sweat teasts. I have been diagnosed at Massachusetts General Hospital and at Children's Hospital of Boston. This after 47 years of missed dx.
It is your call but because you came here for help I am going to be blunt with you. You can have a consultation with a CYSTIC FIBROSIS SPECIALIST at an APPROVED CF CENTER or you can do NOTHING. If you go to the CF Center and your son DOES NOT have CF, no problem. If you don't go to the CF Center and son has CF, nothing good can happen.
If your son has CF and it goes untreated, his life expectency is about 15 years.
Tell your Doctor that I said that.
Bill
I'm sure that you like your Doctor alot but CF is not your everyday disease and it is unlikely that he/she is capable of making the diagnosis. If your son has CF and it remains undiagnosed and untreated, he can have ongoing and irreversable lung damage. At age 47 I had two "borderline" sweat teasts. I have been diagnosed at Massachusetts General Hospital and at Children's Hospital of Boston. This after 47 years of missed dx.
It is your call but because you came here for help I am going to be blunt with you. You can have a consultation with a CYSTIC FIBROSIS SPECIALIST at an APPROVED CF CENTER or you can do NOTHING. If you go to the CF Center and your son DOES NOT have CF, no problem. If you don't go to the CF Center and son has CF, nothing good can happen.
If your son has CF and it goes untreated, his life expectency is about 15 years.
Tell your Doctor that I said that.
Bill
I second what Printer said. My daughter remains in CF diagnostic limbo, but her FEV1 has gone from 55% Jan 2011 to 100% Jan 2012 with CF treatment. I stayed with the same pulmonologist for 8 years and regret it because my daughter age 12 does have permanent lung damage and lungs colonized with bacteria.
In addition to go to an accredited CF center make sure the pulmonologist you see has a large number of the CF patients seen at that hospital. We saw a pulmonologist at an accredited CF center listed on the hospital website as on the CF team who according to the chief of the pulmonary department we see now has no CF patients.
This people on this site have completely taught me to advocate for my daughter and supported us through our 15 months plus in diagnostic limbo.
Best wishes.
In addition to go to an accredited CF center make sure the pulmonologist you see has a large number of the CF patients seen at that hospital. We saw a pulmonologist at an accredited CF center listed on the hospital website as on the CF team who according to the chief of the pulmonary department we see now has no CF patients.
This people on this site have completely taught me to advocate for my daughter and supported us through our 15 months plus in diagnostic limbo.
Best wishes.
I second what Printer said. My daughter remains in CF diagnostic limbo, but her FEV1 has gone from 55% Jan 2011 to 100% Jan 2012 with CF treatment. I stayed with the same pulmonologist for 8 years and regret it because my daughter age 12 does have permanent lung damage and lungs colonized with bacteria.
In addition to go to an accredited CF center make sure the pulmonologist you see has a large number of the CF patients seen at that hospital. We saw a pulmonologist at an accredited CF center listed on the hospital website as on the CF team who according to the chief of the pulmonary department we see now has no CF patients.
This people on this site have completely taught me to advocate for my daughter and supported us through our 15 months plus in diagnostic limbo.
Best wishes.
In addition to go to an accredited CF center make sure the pulmonologist you see has a large number of the CF patients seen at that hospital. We saw a pulmonologist at an accredited CF center listed on the hospital website as on the CF team who according to the chief of the pulmonary department we see now has no CF patients.
This people on this site have completely taught me to advocate for my daughter and supported us through our 15 months plus in diagnostic limbo.
Best wishes.
Ok so I no nothing really atall and have no clue what a Pulmo is or what anything is for that matter so any help in terms of what I should ask for and results I should see would be great, all I know is my son's had a terrible chest from birth treated for asthma with lots of steriods and inhalers, medicine to help with hayfever and nasal spray as he has rhinasitus, hes had lots of chest infections and pneumonia, his 3 sweat tests were boarderline and CT scan shows no lung damage.
I am in Manchester, England and by some posts am assuming that this is a US site?? I don't even know if we have a CF centre but I did meet with the CF doctor at the hospital last week who said his not CF but then went onto say that he still could be? I was thinking of asking for a change of hospital as through all this I have not been explained much and here conficiting stories like his recent app was told hes not but he could be then went away with an on the fence still so right back in limbo, hes going in hospital for a 24hr PH study to check for reflux a lung function tests and some more bloods, and he said they may want to look at his tubes inside or something but I don't know anything other than the bits am told so its really hard and hate all this hanging arround when I just want to know for the sake of him and my other children I have 3 younger 2 seem fine in everyway and my youngest at 2 has had bronuilitus several times so been in hospital on oxygen and again treated with asthma his sweat test is tomorrow so heres hoping for some good news.
Thanks for the replies and I am due to meet again in 3-4weeks when all the tests will be in don't want them to think I seem pushy but any advice on what I could ask for or ask would be great <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am in Manchester, England and by some posts am assuming that this is a US site?? I don't even know if we have a CF centre but I did meet with the CF doctor at the hospital last week who said his not CF but then went onto say that he still could be? I was thinking of asking for a change of hospital as through all this I have not been explained much and here conficiting stories like his recent app was told hes not but he could be then went away with an on the fence still so right back in limbo, hes going in hospital for a 24hr PH study to check for reflux a lung function tests and some more bloods, and he said they may want to look at his tubes inside or something but I don't know anything other than the bits am told so its really hard and hate all this hanging arround when I just want to know for the sake of him and my other children I have 3 younger 2 seem fine in everyway and my youngest at 2 has had bronuilitus several times so been in hospital on oxygen and again treated with asthma his sweat test is tomorrow so heres hoping for some good news.
Thanks for the replies and I am due to meet again in 3-4weeks when all the tests will be in don't want them to think I seem pushy but any advice on what I could ask for or ask would be great <img src="i/expressions/face-icon-small-smile.gif" border="0">
Ok so I no nothing really atall and have no clue what a Pulmo is or what anything is for that matter so any help in terms of what I should ask for and results I should see would be great, all I know is my son's had a terrible chest from birth treated for asthma with lots of steriods and inhalers, medicine to help with hayfever and nasal spray as he has rhinasitus, hes had lots of chest infections and pneumonia, his 3 sweat tests were boarderline and CT scan shows no lung damage.
I am in Manchester, England and by some posts am assuming that this is a US site?? I don't even know if we have a CF centre but I did meet with the CF doctor at the hospital last week who said his not CF but then went onto say that he still could be? I was thinking of asking for a change of hospital as through all this I have not been explained much and here conficiting stories like his recent app was told hes not but he could be then went away with an on the fence still so right back in limbo, hes going in hospital for a 24hr PH study to check for reflux a lung function tests and some more bloods, and he said they may want to look at his tubes inside or something but I don't know anything other than the bits am told so its really hard and hate all this hanging arround when I just want to know for the sake of him and my other children I have 3 younger 2 seem fine in everyway and my youngest at 2 has had bronuilitus several times so been in hospital on oxygen and again treated with asthma his sweat test is tomorrow so heres hoping for some good news.
Thanks for the replies and I am due to meet again in 3-4weeks when all the tests will be in don't want them to think I seem pushy but any advice on what I could ask for or ask would be great <img src="i/expressions/face-icon-small-smile.gif" border="0">
I am in Manchester, England and by some posts am assuming that this is a US site?? I don't even know if we have a CF centre but I did meet with the CF doctor at the hospital last week who said his not CF but then went onto say that he still could be? I was thinking of asking for a change of hospital as through all this I have not been explained much and here conficiting stories like his recent app was told hes not but he could be then went away with an on the fence still so right back in limbo, hes going in hospital for a 24hr PH study to check for reflux a lung function tests and some more bloods, and he said they may want to look at his tubes inside or something but I don't know anything other than the bits am told so its really hard and hate all this hanging arround when I just want to know for the sake of him and my other children I have 3 younger 2 seem fine in everyway and my youngest at 2 has had bronuilitus several times so been in hospital on oxygen and again treated with asthma his sweat test is tomorrow so heres hoping for some good news.
Thanks for the replies and I am due to meet again in 3-4weeks when all the tests will be in don't want them to think I seem pushy but any advice on what I could ask for or ask would be great <img src="i/expressions/face-icon-small-smile.gif" border="0">
I recently read on a blog from someone in the UK with CF whose 4 month old nephew had failure to thrive, respiratory issues, passed the newborn screening and then passed the sweat test so they were relieved he didn't have cf.
Obviously they do things a bit differently in England than in the states; however, I suggest you contact sophiesmum who is on this site and has a blog and see if she has any suggestions on how to go about getting further testing or treatment. I would also request that your doctor do a respiratory culture to see if your son is growing any common cf bugs such as pseudomonas, steno. maltophilia and at the very least be able to match the correct antibiotic with whatever bug he might be growing.
As for being pushy -- something is going on with your child and you want answers. So if it's not CF, hopefully they can figure things out, or at least treat the symptoms.
Obviously they do things a bit differently in England than in the states; however, I suggest you contact sophiesmum who is on this site and has a blog and see if she has any suggestions on how to go about getting further testing or treatment. I would also request that your doctor do a respiratory culture to see if your son is growing any common cf bugs such as pseudomonas, steno. maltophilia and at the very least be able to match the correct antibiotic with whatever bug he might be growing.
As for being pushy -- something is going on with your child and you want answers. So if it's not CF, hopefully they can figure things out, or at least treat the symptoms.
I recently read on a blog from someone in the UK with CF whose 4 month old nephew had failure to thrive, respiratory issues, passed the newborn screening and then passed the sweat test so they were relieved he didn't have cf.
Obviously they do things a bit differently in England than in the states; however, I suggest you contact sophiesmum who is on this site and has a blog and see if she has any suggestions on how to go about getting further testing or treatment. I would also request that your doctor do a respiratory culture to see if your son is growing any common cf bugs such as pseudomonas, steno. maltophilia and at the very least be able to match the correct antibiotic with whatever bug he might be growing.
As for being pushy -- something is going on with your child and you want answers. So if it's not CF, hopefully they can figure things out, or at least treat the symptoms.
Obviously they do things a bit differently in England than in the states; however, I suggest you contact sophiesmum who is on this site and has a blog and see if she has any suggestions on how to go about getting further testing or treatment. I would also request that your doctor do a respiratory culture to see if your son is growing any common cf bugs such as pseudomonas, steno. maltophilia and at the very least be able to match the correct antibiotic with whatever bug he might be growing.
As for being pushy -- something is going on with your child and you want answers. So if it's not CF, hopefully they can figure things out, or at least treat the symptoms.