Hi thanks for the advice! We have been doing CPT for over two years now. His doctors all felt that the vest would be more affective for my child. He had a CT scan that showed large sections of the lungs being comprimised from all the infections. I am glad to hear CPT works for you. It would be nice to just do that and not have to battle insurance, but it is the way it is. He has been doing fantastic with the vest and it is great to see him feeling well.
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- Thread starter martysmom
- Start date
BaylorCrew07
New member
If you don't get definitive results from Quest, I would not bother with another sweat test, but that's just me. I had 4 or 5 as an infant, that were all borderline/inconclusive.
When I was tested again at age 20, my sweat test was like 1 pt over borderline, so they went ahead with genetic testing to confirm.
If he has had inconclusive sweat tests in the past, it may happen again...and even if it does come back positive, you will still probably wonder if it's 100% accurate, what mutations he has, etc.
Best of luck to you guys; I know how frustrating it is to just wait for a diagnosis <img src="i/expressions/heart.gif" border="0">
When I was tested again at age 20, my sweat test was like 1 pt over borderline, so they went ahead with genetic testing to confirm.
If he has had inconclusive sweat tests in the past, it may happen again...and even if it does come back positive, you will still probably wonder if it's 100% accurate, what mutations he has, etc.
Best of luck to you guys; I know how frustrating it is to just wait for a diagnosis <img src="i/expressions/heart.gif" border="0">
BaylorCrew07
New member
If you don't get definitive results from Quest, I would not bother with another sweat test, but that's just me. I had 4 or 5 as an infant, that were all borderline/inconclusive.
When I was tested again at age 20, my sweat test was like 1 pt over borderline, so they went ahead with genetic testing to confirm.
If he has had inconclusive sweat tests in the past, it may happen again...and even if it does come back positive, you will still probably wonder if it's 100% accurate, what mutations he has, etc.
Best of luck to you guys; I know how frustrating it is to just wait for a diagnosis <img src="i/expressions/heart.gif" border="0">
When I was tested again at age 20, my sweat test was like 1 pt over borderline, so they went ahead with genetic testing to confirm.
If he has had inconclusive sweat tests in the past, it may happen again...and even if it does come back positive, you will still probably wonder if it's 100% accurate, what mutations he has, etc.
Best of luck to you guys; I know how frustrating it is to just wait for a diagnosis <img src="i/expressions/heart.gif" border="0">
BaylorCrew07
New member
If you don't get definitive results from Quest, I would not bother with another sweat test, but that's just me. I had 4 or 5 as an infant, that were all borderline/inconclusive.
<br />
<br />When I was tested again at age 20, my sweat test was like 1 pt over borderline, so they went ahead with genetic testing to confirm.
<br />
<br />If he has had inconclusive sweat tests in the past, it may happen again...and even if it does come back positive, you will still probably wonder if it's 100% accurate, what mutations he has, etc.
<br />
<br />Best of luck to you guys; I know how frustrating it is to just wait for a diagnosis <img src="i/expressions/heart.gif" border="0">
<br />
<br />When I was tested again at age 20, my sweat test was like 1 pt over borderline, so they went ahead with genetic testing to confirm.
<br />
<br />If he has had inconclusive sweat tests in the past, it may happen again...and even if it does come back positive, you will still probably wonder if it's 100% accurate, what mutations he has, etc.
<br />
<br />Best of luck to you guys; I know how frustrating it is to just wait for a diagnosis <img src="i/expressions/heart.gif" border="0">
My grandson was missed dx for almost a year. He always had a cold, runny noise, small etc. Every time my dtr would take him the dr's it was the same thing - he has childhood asthma, he has bronchitis, he has a cold, bring him home and put him on the nebulizer. Oh another; he's just short in stature. Last straw another trip to the ER where the nurse's reported to my dtr that Jaden's PF was at 46%, this stupid dr refused to hear it could be that low. The nurses did the test 3 times with two different machines and he still send Jaden home w/ dx asthma. A week later a different ER - lung x-ray, PF test and an emergency ride to Scottish Rite - dx 2 days later with CF -- I have no idea how dr's can misdiagnosed this disease so frequently when all the signs are very apparent. DO NOT GIVE UP THERE ARE OVER 1500 MUTATIONS OUT THERE. Jaden's dad was negative for the first 32 - they finally found his mutations and he has two so Jaden has 3 CF mutations. IF YOU KNOW SOMETHING IS WRONG CONTINUE TO PURSUE - My dtr did and it literally saved Jaden's life
My grandson was missed dx for almost a year. He always had a cold, runny noise, small etc. Every time my dtr would take him the dr's it was the same thing - he has childhood asthma, he has bronchitis, he has a cold, bring him home and put him on the nebulizer. Oh another; he's just short in stature. Last straw another trip to the ER where the nurse's reported to my dtr that Jaden's PF was at 46%, this stupid dr refused to hear it could be that low. The nurses did the test 3 times with two different machines and he still send Jaden home w/ dx asthma. A week later a different ER - lung x-ray, PF test and an emergency ride to Scottish Rite - dx 2 days later with CF -- I have no idea how dr's can misdiagnosed this disease so frequently when all the signs are very apparent. DO NOT GIVE UP THERE ARE OVER 1500 MUTATIONS OUT THERE. Jaden's dad was negative for the first 32 - they finally found his mutations and he has two so Jaden has 3 CF mutations. IF YOU KNOW SOMETHING IS WRONG CONTINUE TO PURSUE - My dtr did and it literally saved Jaden's life
My grandson was missed dx for almost a year. He always had a cold, runny noise, small etc. Every time my dtr would take him the dr's it was the same thing - he has childhood asthma, he has bronchitis, he has a cold, bring him home and put him on the nebulizer. Oh another; he's just short in stature. Last straw another trip to the ER where the nurse's reported to my dtr that Jaden's PF was at 46%, this stupid dr refused to hear it could be that low. The nurses did the test 3 times with two different machines and he still send Jaden home w/ dx asthma. A week later a different ER - lung x-ray, PF test and an emergency ride to Scottish Rite - dx 2 days later with CF -- I have no idea how dr's can misdiagnosed this disease so frequently when all the signs are very apparent. DO NOT GIVE UP THERE ARE OVER 1500 MUTATIONS OUT THERE. Jaden's dad was negative for the first 32 - they finally found his mutations and he has two so Jaden has 3 CF mutations. IF YOU KNOW SOMETHING IS WRONG CONTINUE TO PURSUE - My dtr did and it literally saved Jaden's life