Two borderline sweat chloride test

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Mistyjo

New member
I've already posted this in another forum so I apologize to anyone who has already read it. 
My 5 yr old had two borderline sweat chloride test and our ped wants her to see a CF specialist and have genetic testing done.  There is a distant family history of CF.  What brought on the testing is chronic constipation since birth and failure to thrive.  She has had some respiratory infections but I don't think any worse than a typical child.  She has had croup several times.  She doesn't have a chronic cough.  Anyone have a similar experience and it turned out not to be CF or turned out to be CF?  Thanks for any advice.
 
M

Mistyjo

New member
I've already posted this in another forum so I apologize to anyone who has already read it.
My 5 yr old had two borderline sweat chloride test and our ped wants her to see a CF specialist and have genetic testing done. There is a distant family history of CF. What brought on the testing is chronic constipation since birth and failure to thrive. She has had some respiratory infections but I don't think any worse than a typical child. She has had croup several times. She doesn't have a chronic cough. Anyone have a similar experience and it turned out not to be CF or turned out to be CF? Thanks for any advice.
 
M

Mistyjo

New member
<p>I've already posted this in another forum so I apologize to anyone who has already read it.
<p>My 5 yr old had two borderline sweat chloride test and our ped wants her to see a CF specialist and have genetic testing done. There is a distant family history of CF. What brought on the testing is chronic constipation since birth and failure to thrive. She has had some respiratory infections but I don't think any worse than a typical child. She has had croup several times. She doesn't have a chronic cough. Anyone have a similar experience and it turned out not to be CF or turned out to be CF? Thanks for any advice.
 
E

edan

Guest
Hi. My 3yo had a borderline sweat test with no symptoms. No GI symptoms. No failure to thrive. No respiratory symptoms. But chest xray shows mild inflammation and genetics show CF. So yes, with only borderline sweat tests your child could have cf. Better get the genetics so you can preventatively treat." if it is cf. Since my daughter was diagnosed she has gotten some bad viruses this year (as have we all). I am glad we had the tools in hand to knock them down without having permanent lung damage. Finding out your child has cf sucks, no doubt. But, over this last year (she is 4 now) things have worked out just fine. Just takes a little extra care to keep them healthy and the support grouP is fantastic.
 
E

edan

Guest
Hi. My 3yo had a borderline sweat test with no symptoms. No GI symptoms. No failure to thrive. No respiratory symptoms. But chest xray shows mild inflammation and genetics show CF. So yes, with only borderline sweat tests your child could have cf. Better get the genetics so you can preventatively treat." if it is cf. Since my daughter was diagnosed she has gotten some bad viruses this year (as have we all). I am glad we had the tools in hand to knock them down without having permanent lung damage. Finding out your child has cf sucks, no doubt. But, over this last year (she is 4 now) things have worked out just fine. Just takes a little extra care to keep them healthy and the support grouP is fantastic.
 
E

edan

Guest
Hi. My 3yo had a borderline sweat test with no symptoms. No GI symptoms. No failure to thrive. No respiratory symptoms. But chest xray shows mild inflammation and genetics show CF. So yes, with only borderline sweat tests your child could have cf. Better get the genetics so you can preventatively treat." if it is cf. Since my daughter was diagnosed she has gotten some bad viruses this year (as have we all). I am glad we had the tools in hand to knock them down without having permanent lung damage. Finding out your child has cf sucks, no doubt. But, over this last year (she is 4 now) things have worked out just fine. Just takes a little extra care to keep them healthy and the support grouP is fantastic.
 
M

Mistyjo

New member
Thanks Edan for responding.  I have to call childrens on mon to get scheduled with the cf specialist.  What was your daughter's sweat chloride results?  My daughter's was 41 and 50.  Is your daughter's mutation a rare one?  How long did it take to get the results of the genetic testing?  Thanks for any help!!
 
M

Mistyjo

New member
Thanks Edan for responding. I have to call childrens on mon to get scheduled with the cf specialist. What was your daughter's sweat chloride results? My daughter's was 41 and 50. Is your daughter's mutation a rare one? How long did it take to get the results of the genetic testing? Thanks for any help!!
 
M

Mistyjo

New member
<p>Thanks Edan for responding. I have to call childrens on mon to get scheduled with the cf specialist. What was your daughter's sweat chloride results? My daughter's was 41 and 50. Is your daughter's mutation a rare one? How long did it take to get the results of the genetic testing? Thanks for any help!!
 
E

edan

Guest
Hi. My daughter's was a 58. We knew our mutations so went straight to genetic testing after that. They are both in the top 32 mutation panel set. So it only took a week. Her 2nd one is a bit rare but they do test for it standardly.
 
E

edan

Guest
Hi. My daughter's was a 58. We knew our mutations so went straight to genetic testing after that. They are both in the top 32 mutation panel set. So it only took a week. Her 2nd one is a bit rare but they do test for it standardly.
 
E

edan

Guest
Hi. My daughter's was a 58. We knew our mutations so went straight to genetic testing after that. They are both in the top 32 mutation panel set. So it only took a week. Her 2nd one is a bit rare but they do test for it standardly.
 
S

shehasmyheart

New member
Hi everyone...I am not sure where to go or what to do I need advice form people with experiance so I came here.

My 8yr old daughter has been sick since NOV, she has had rattling/weezing, congestion and a presistent non productive cough ( the times that she has expelled mucous it has been thick a dark green). Anyways we have been tossed around from doctor to doctor, first it was a common cold, then possiably something lodged in her throat (umm ok), then it was asthma, then may be allergies , then asthma again....she has hand MANY MANY antibiotics (the good ones), breathing treatments , steroids, otc meds, x-rays etc. ALL OF THEM DID NOT WORK! We are now seeing a pedi pulmonlogist (sp?) he did a breathing test which was impossianle to get a reading due to all the gunk in her chest, he did an chest x-ray (mild inflammation of lungs) then he did a culture & sensitvity test, in which he made the diagnosis that she has Presistent Bacterial Bronchitis (sp?), in which she was given the antibiotic that was supposed to be sensitve to , well again failure...Now she is on ZYVOX whic she has been taken for 3 days and as of yet I do not see any improvement, he has also ordered her to get a sweat test which she has on May 3rd, depending on the results of the test and if this new antibiotic works she may have to get inevanious antibiotics. Besides congestion and cough she has no other symptoms, she is a good eater and it shows and I did the lick test on her arm and she thought I was CRAZY!, but i did not taste salt....so is she someone who would seem like they might have CF? her doctor did tell me he does not think she has it but wants to rule it out. Any feedback is welcomed thanks ahead
 
S

shehasmyheart

New member
Hi everyone...I am not sure where to go or what to do I need advice form people with experiance so I came here.

My 8yr old daughter has been sick since NOV, she has had rattling/weezing, congestion and a presistent non productive cough ( the times that she has expelled mucous it has been thick a dark green). Anyways we have been tossed around from doctor to doctor, first it was a common cold, then possiably something lodged in her throat (umm ok), then it was asthma, then may be allergies , then asthma again....she has hand MANY MANY antibiotics (the good ones), breathing treatments , steroids, otc meds, x-rays etc. ALL OF THEM DID NOT WORK! We are now seeing a pedi pulmonlogist (sp?) he did a breathing test which was impossianle to get a reading due to all the gunk in her chest, he did an chest x-ray (mild inflammation of lungs) then he did a culture & sensitvity test, in which he made the diagnosis that she has Presistent Bacterial Bronchitis (sp?), in which she was given the antibiotic that was supposed to be sensitve to , well again failure...Now she is on ZYVOX whic she has been taken for 3 days and as of yet I do not see any improvement, he has also ordered her to get a sweat test which she has on May 3rd, depending on the results of the test and if this new antibiotic works she may have to get inevanious antibiotics. Besides congestion and cough she has no other symptoms, she is a good eater and it shows and I did the lick test on her arm and she thought I was CRAZY!, but i did not taste salt....so is she someone who would seem like they might have CF? her doctor did tell me he does not think she has it but wants to rule it out. Any feedback is welcomed thanks ahead
 
S

shehasmyheart

New member
Hi everyone...I am not sure where to go or what to do I need advice form people with experiance so I came here.
<br />
<br />My 8yr old daughter has been sick since NOV, she has had rattling/weezing, congestion and a presistent non productive cough ( the times that she has expelled mucous it has been thick a dark green). Anyways we have been tossed around from doctor to doctor, first it was a common cold, then possiably something lodged in her throat (umm ok), then it was asthma, then may be allergies , then asthma again....she has hand MANY MANY antibiotics (the good ones), breathing treatments , steroids, otc meds, x-rays etc. ALL OF THEM DID NOT WORK! We are now seeing a pedi pulmonlogist (sp?) he did a breathing test which was impossianle to get a reading due to all the gunk in her chest, he did an chest x-ray (mild inflammation of lungs) then he did a culture & sensitvity test, in which he made the diagnosis that she has Presistent Bacterial Bronchitis (sp?), in which she was given the antibiotic that was supposed to be sensitve to , well again failure...Now she is on ZYVOX whic she has been taken for 3 days and as of yet I do not see any improvement, he has also ordered her to get a sweat test which she has on May 3rd, depending on the results of the test and if this new antibiotic works she may have to get inevanious antibiotics. Besides congestion and cough she has no other symptoms, she is a good eater and it shows and I did the lick test on her arm and she thought I was CRAZY!, but i did not taste salt....so is she someone who would seem like they might have CF? her doctor did tell me he does not think she has it but wants to rule it out. Any feedback is welcomed thanks ahead
 
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