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Confused in California
- Thread starter Tammey
- Start date
Tammey, a sweat test for CF can present negative a numerous amount of time and genetic (blood) testing reveals that in fact a person has 2 CF mutations. I am going to see if I can find any previous threads about that on this site, I know there are a few.
If I were you, I would push for genetic testing. Even though the sweat test was negative, that does not mean she does not have CF. Quite honestly th genetic testing is becoming more reliable than the sweat test, although neither method is 100% fallable because more CF mutations are being discovered daily and some CF mutations have historically not registered on sweat tests.
If I were you, I would push for genetic testing. Even though the sweat test was negative, that does not mean she does not have CF. Quite honestly th genetic testing is becoming more reliable than the sweat test, although neither method is 100% fallable because more CF mutations are being discovered daily and some CF mutations have historically not registered on sweat tests.
Tammey, a sweat test for CF can present negative a numerous amount of time and genetic (blood) testing reveals that in fact a person has 2 CF mutations. I am going to see if I can find any previous threads about that on this site, I know there are a few.
If I were you, I would push for genetic testing. Even though the sweat test was negative, that does not mean she does not have CF. Quite honestly th genetic testing is becoming more reliable than the sweat test, although neither method is 100% fallable because more CF mutations are being discovered daily and some CF mutations have historically not registered on sweat tests.
If I were you, I would push for genetic testing. Even though the sweat test was negative, that does not mean she does not have CF. Quite honestly th genetic testing is becoming more reliable than the sweat test, although neither method is 100% fallable because more CF mutations are being discovered daily and some CF mutations have historically not registered on sweat tests.
Tammey,
Hi, I am a lurker. I also have a daughter who had recurring pneumonia during her first 3 years (5 times in 1 year alone). In her case, she also tested negative for cf with a low score (10). I lurk here because all 3 of my children have asthma and other health issues that mimicked cf and it was a long process ruling it out. Plus a close friend of mine's wife died from cf while awaiting a lung transplant. It was a painful process for him.
In my dd's case, it was the combo of asthma, year round allergies, and frequent colds from daycare that caused her recurring pneumonia. 3 years later (at 6), and 4 years into weekly allergy shots and very aggressive asthma/allergy treatment, she is a totally different child. It is true that there are false negative sweat tests but <b>if</b> the test was done by an accredited hospital, and if she doesn't have other symptoms that lead you to think the sweat test was a false negative (ie failure to thrive, etc.), then it's much more likely that your negative is a negative. Again, that is assuming it was done by an accredited hospital. According to our pulmonologist, false negatives are much more likely in the 30s or even 20s than the teens. Our pulmo is with an accredited cf pediatric clinic so I do trust his opinion. I'd persue the allergy testing and request aggressive treatment for her asthma. Good luck!
Hi, I am a lurker. I also have a daughter who had recurring pneumonia during her first 3 years (5 times in 1 year alone). In her case, she also tested negative for cf with a low score (10). I lurk here because all 3 of my children have asthma and other health issues that mimicked cf and it was a long process ruling it out. Plus a close friend of mine's wife died from cf while awaiting a lung transplant. It was a painful process for him.
In my dd's case, it was the combo of asthma, year round allergies, and frequent colds from daycare that caused her recurring pneumonia. 3 years later (at 6), and 4 years into weekly allergy shots and very aggressive asthma/allergy treatment, she is a totally different child. It is true that there are false negative sweat tests but <b>if</b> the test was done by an accredited hospital, and if she doesn't have other symptoms that lead you to think the sweat test was a false negative (ie failure to thrive, etc.), then it's much more likely that your negative is a negative. Again, that is assuming it was done by an accredited hospital. According to our pulmonologist, false negatives are much more likely in the 30s or even 20s than the teens. Our pulmo is with an accredited cf pediatric clinic so I do trust his opinion. I'd persue the allergy testing and request aggressive treatment for her asthma. Good luck!
Tammey,
Hi, I am a lurker. I also have a daughter who had recurring pneumonia during her first 3 years (5 times in 1 year alone). In her case, she also tested negative for cf with a low score (10). I lurk here because all 3 of my children have asthma and other health issues that mimicked cf and it was a long process ruling it out. Plus a close friend of mine's wife died from cf while awaiting a lung transplant. It was a painful process for him.
In my dd's case, it was the combo of asthma, year round allergies, and frequent colds from daycare that caused her recurring pneumonia. 3 years later (at 6), and 4 years into weekly allergy shots and very aggressive asthma/allergy treatment, she is a totally different child. It is true that there are false negative sweat tests but <b>if</b> the test was done by an accredited hospital, and if she doesn't have other symptoms that lead you to think the sweat test was a false negative (ie failure to thrive, etc.), then it's much more likely that your negative is a negative. Again, that is assuming it was done by an accredited hospital. According to our pulmonologist, false negatives are much more likely in the 30s or even 20s than the teens. Our pulmo is with an accredited cf pediatric clinic so I do trust his opinion. I'd persue the allergy testing and request aggressive treatment for her asthma. Good luck!
Hi, I am a lurker. I also have a daughter who had recurring pneumonia during her first 3 years (5 times in 1 year alone). In her case, she also tested negative for cf with a low score (10). I lurk here because all 3 of my children have asthma and other health issues that mimicked cf and it was a long process ruling it out. Plus a close friend of mine's wife died from cf while awaiting a lung transplant. It was a painful process for him.
In my dd's case, it was the combo of asthma, year round allergies, and frequent colds from daycare that caused her recurring pneumonia. 3 years later (at 6), and 4 years into weekly allergy shots and very aggressive asthma/allergy treatment, she is a totally different child. It is true that there are false negative sweat tests but <b>if</b> the test was done by an accredited hospital, and if she doesn't have other symptoms that lead you to think the sweat test was a false negative (ie failure to thrive, etc.), then it's much more likely that your negative is a negative. Again, that is assuming it was done by an accredited hospital. According to our pulmonologist, false negatives are much more likely in the 30s or even 20s than the teens. Our pulmo is with an accredited cf pediatric clinic so I do trust his opinion. I'd persue the allergy testing and request aggressive treatment for her asthma. Good luck!
Lurker again. A few other issues you may want to look into: immune testing. It's basically just a serious of blood tests over several weeks/months, including pre & post titres to some vaccines. Primary immune deficiencies are another common cause for recurring pneumonias. YOu can do a search using "primary immune deficiency" and you'll get some good information. Another common cause for really young children is aspiration. Not real likely at your dd's age, but something to consider if everything else is negative. Also, reflux can cause recurring pneumonia, especially when it's combined with asthma. My 7 yr ds has reflux along with his asthma and has really bad sinus disease because of it. Finally, there's a disease called primary ciliary dyskinesia i(PCD) s another disease that mimics the lung and sinus aspect of cf. However, usually with it there is also a significant history of ear and sinus infections. This is the only disease we haven't ruled out in our children because it's very difficult to diagnose (worse than cf even). IT requires biopsies of the cilia from the respiratory tract. When my 7 yr old has his next sinus surgery, they will be testing him for this (at the request of 2 ENTs and our allergist.) Personally, the order in which I'd persue testing is as follows (this is both because of the likelihood for each and the difficulty/expense of the testing.)
1-allergy testing
2-immune testing or reflux whichever is more likely. When one's ruled out, test for the 2nd.
3-if everything is negative from all 3 and your dd is still getting recurring pneumonia despite aggressive asthma treatment (see either a pulmo or asthma/allergy specialist), then I'd probably request genetic testing for cf, followed by testing for aspiration.
Most specialists won't test for PCD unless they have high suspicion and have already ruled every other possibility out.
Oh, one last thing you can look into is Alpha 1 Antitrypsin. Not real likely at her age but an easy blood test. The most likely causes are probably asthma, allergies, and/or reflux.
Good luck!!
1-allergy testing
2-immune testing or reflux whichever is more likely. When one's ruled out, test for the 2nd.
3-if everything is negative from all 3 and your dd is still getting recurring pneumonia despite aggressive asthma treatment (see either a pulmo or asthma/allergy specialist), then I'd probably request genetic testing for cf, followed by testing for aspiration.
Most specialists won't test for PCD unless they have high suspicion and have already ruled every other possibility out.
Oh, one last thing you can look into is Alpha 1 Antitrypsin. Not real likely at her age but an easy blood test. The most likely causes are probably asthma, allergies, and/or reflux.
Good luck!!
Lurker again. A few other issues you may want to look into: immune testing. It's basically just a serious of blood tests over several weeks/months, including pre & post titres to some vaccines. Primary immune deficiencies are another common cause for recurring pneumonias. YOu can do a search using "primary immune deficiency" and you'll get some good information. Another common cause for really young children is aspiration. Not real likely at your dd's age, but something to consider if everything else is negative. Also, reflux can cause recurring pneumonia, especially when it's combined with asthma. My 7 yr ds has reflux along with his asthma and has really bad sinus disease because of it. Finally, there's a disease called primary ciliary dyskinesia i(PCD) s another disease that mimics the lung and sinus aspect of cf. However, usually with it there is also a significant history of ear and sinus infections. This is the only disease we haven't ruled out in our children because it's very difficult to diagnose (worse than cf even). IT requires biopsies of the cilia from the respiratory tract. When my 7 yr old has his next sinus surgery, they will be testing him for this (at the request of 2 ENTs and our allergist.) Personally, the order in which I'd persue testing is as follows (this is both because of the likelihood for each and the difficulty/expense of the testing.)
1-allergy testing
2-immune testing or reflux whichever is more likely. When one's ruled out, test for the 2nd.
3-if everything is negative from all 3 and your dd is still getting recurring pneumonia despite aggressive asthma treatment (see either a pulmo or asthma/allergy specialist), then I'd probably request genetic testing for cf, followed by testing for aspiration.
Most specialists won't test for PCD unless they have high suspicion and have already ruled every other possibility out.
Oh, one last thing you can look into is Alpha 1 Antitrypsin. Not real likely at her age but an easy blood test. The most likely causes are probably asthma, allergies, and/or reflux.
Good luck!!
1-allergy testing
2-immune testing or reflux whichever is more likely. When one's ruled out, test for the 2nd.
3-if everything is negative from all 3 and your dd is still getting recurring pneumonia despite aggressive asthma treatment (see either a pulmo or asthma/allergy specialist), then I'd probably request genetic testing for cf, followed by testing for aspiration.
Most specialists won't test for PCD unless they have high suspicion and have already ruled every other possibility out.
Oh, one last thing you can look into is Alpha 1 Antitrypsin. Not real likely at her age but an easy blood test. The most likely causes are probably asthma, allergies, and/or reflux.
Good luck!!
post of someones son who passed the sweat test but has 2 CF mutations
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post of someones son who passed the sweat test but has 2 CF mutations
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Thank you very much. Kayla does not express the other signs of Cf she is not loozing weight and is basically a normal 3 year old in everything. She gets sick about every 2 weeks with this cough. We have her on Zantac for acid reflux they are not sure if she has that but they said to try it and see if it works. Also she has had the immune system testing which came back on the 100's not the thousands which they said was good. Then we have Allergy testing on 2/6/2006. She also takes Flovent and Albuterol. She is also suppost to have an upper GI series done as well. basically every day. I do have 2 other children with Asthma but they seem to be able to take the medication and have it work- where with kayla she will take it and it does not seem to phase anything it almost makes it worse. There are 4 of them total my oldest does not have Asthma at all. This is also taking a toll on my marriage my husband says there is nothnign wrong with her she just has a cold but I know from having 4 kids that it is not just a cold. Most of the time she gets sick she does not even have a runny nose. Any way Thank you all so much for your help you have all been so great. Its so strange to have bonds with peopel you have never met.
Tammey Mom of Kayla- 3
Tammey Mom of Kayla- 3
Thank you very much. Kayla does not express the other signs of Cf she is not loozing weight and is basically a normal 3 year old in everything. She gets sick about every 2 weeks with this cough. We have her on Zantac for acid reflux they are not sure if she has that but they said to try it and see if it works. Also she has had the immune system testing which came back on the 100's not the thousands which they said was good. Then we have Allergy testing on 2/6/2006. She also takes Flovent and Albuterol. She is also suppost to have an upper GI series done as well. basically every day. I do have 2 other children with Asthma but they seem to be able to take the medication and have it work- where with kayla she will take it and it does not seem to phase anything it almost makes it worse. There are 4 of them total my oldest does not have Asthma at all. This is also taking a toll on my marriage my husband says there is nothnign wrong with her she just has a cold but I know from having 4 kids that it is not just a cold. Most of the time she gets sick she does not even have a runny nose. Any way Thank you all so much for your help you have all been so great. Its so strange to have bonds with peopel you have never met.
Tammey Mom of Kayla- 3
Tammey Mom of Kayla- 3
Hi, Tammey, it's me, the lurker again, lol. Have the dr's done a ct of the sinuses? That's been the key for my 7 yr old. He was sick constantly, starting within literally a week of starting daycare at 5 months old. (Actually, he had mild respiratory distress at birth and some mild issues before daycare but daycare was the turning point.) Even when we dropped him out of daycare a few months later, he was still sick. Constant ear infections, sinus infections, bronchitis, croup, recurring pink eye (so they thought at the time, now we know it's the sinuses), pneumonias, bronchiolitis, RSV, asthma. He also dropped from the 95% down to the 25% for weight in 4 months (now at 7 is at the 5%). He was almost constantly on antibiotics (to give you an idea, he's 7-1/2 now and has been on antibiotics close to 60 times, almost half of those in the first 24 months, including one round of IV antibiotics. At least a dozen of those rounds have been for 3-6 weeks each. Long story short, ds is asthmatic, he does have reflux, he does have allergies although they didn't show up until he was 5, but the main problem is his sinuses. His chronic sinusitis is considered refractory to treatment (meaning they've tried medical and surgical intervention and can not fix or even alleviate the problem.) Instead, the key for him is to treat everything else aggressively. Ds's threshhold for illness is much lower than any of our other children but with aggressive treatment, we've raised the threshhold and he's sick much less frequently. WE did go through extensive testing, too, including neg sweat test-9, genetic cf testing - no mutations, immune, etc. Since ds, I've met a few other people with similiar stories whose children ended up having chronic sinus infections, too. If they haven't done a ct scan of the sinuses, request one. and, don't let them talk you into an x-ray. They are not nearly as accurate. Good luck!
Hi, Tammey, it's me, the lurker again, lol. Have the dr's done a ct of the sinuses? That's been the key for my 7 yr old. He was sick constantly, starting within literally a week of starting daycare at 5 months old. (Actually, he had mild respiratory distress at birth and some mild issues before daycare but daycare was the turning point.) Even when we dropped him out of daycare a few months later, he was still sick. Constant ear infections, sinus infections, bronchitis, croup, recurring pink eye (so they thought at the time, now we know it's the sinuses), pneumonias, bronchiolitis, RSV, asthma. He also dropped from the 95% down to the 25% for weight in 4 months (now at 7 is at the 5%). He was almost constantly on antibiotics (to give you an idea, he's 7-1/2 now and has been on antibiotics close to 60 times, almost half of those in the first 24 months, including one round of IV antibiotics. At least a dozen of those rounds have been for 3-6 weeks each. Long story short, ds is asthmatic, he does have reflux, he does have allergies although they didn't show up until he was 5, but the main problem is his sinuses. His chronic sinusitis is considered refractory to treatment (meaning they've tried medical and surgical intervention and can not fix or even alleviate the problem.) Instead, the key for him is to treat everything else aggressively. Ds's threshhold for illness is much lower than any of our other children but with aggressive treatment, we've raised the threshhold and he's sick much less frequently. WE did go through extensive testing, too, including neg sweat test-9, genetic cf testing - no mutations, immune, etc. Since ds, I've met a few other people with similiar stories whose children ended up having chronic sinus infections, too. If they haven't done a ct scan of the sinuses, request one. and, don't let them talk you into an x-ray. They are not nearly as accurate. Good luck!