my 3yr old son has pacreatic enzyme def,reactive airway disease several hospitalizations for lung airway problems..neg sweat test A doctor last week told me he was in this cf gray area and needs to be seen at cf clinic for the rest of his childhood. I my son dosnt have cf why are they treating him like he does ..has anyone ever come across this before what to do where to go....help
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my 3yr old son CF gray area????
- Thread starter anonymous
- Start date
The CF sweat test, just as any test, does on occasion give a false negative. If your son is still having all of these problems I would not rule out the CF, even if a sweat test came back negative. And you might want to get clarification from your doctor as to what he means by "gray area". I have heard some docs use the term "borderline" sweat test, or borderline CF, because the sweat test comes back with numbers that don't specifically mean a child has CF, but they are higher than average. There are other diagnosis options other than a sweat test. There is a "simple" genetic test that is covered by most insurance companies. There is also a more in depth test that I believe tests for all of the known mutations (and I am sure more exist that just haven't been discovered yet). From what I have heard it is a little more difficult to get the ins. to pay for the more extensive test, but with the problems that you listed for your child, I think a letter from the doctor and a copy of his "gray area" sweat test might be enough to get the insurance company to authorize the test.
There are many parents on this board, (who will hopefully respond to your post) that will tell you a doctor looked over their child having CF for many years and it was later diagnosed. You really don't want to be one of those parents, because if your child does have CF, the sooner you get the correct diagnosis the sooner you can begin treating their symptoms and the better it will be for the both of you! Doctors can be wrong, and the amazing things is that some doctors still seem to be SO clueless about CF. I have heard so many cases on this board of doctors mis-diagnosing CF as asthma or some sort of allergy or dairy/digestive problem. The education just isn't there yet. So I would be persistent in your dealings with the doctors and push for more extensive testing on your child.
Julie
There are many parents on this board, (who will hopefully respond to your post) that will tell you a doctor looked over their child having CF for many years and it was later diagnosed. You really don't want to be one of those parents, because if your child does have CF, the sooner you get the correct diagnosis the sooner you can begin treating their symptoms and the better it will be for the both of you! Doctors can be wrong, and the amazing things is that some doctors still seem to be SO clueless about CF. I have heard so many cases on this board of doctors mis-diagnosing CF as asthma or some sort of allergy or dairy/digestive problem. The education just isn't there yet. So I would be persistent in your dealings with the doctors and push for more extensive testing on your child.
Julie
We were actually told several times that Mason was in a "CF grey area". After all the sweat tests and DNA tests it was determined that he is a symptomatic carrier. He was also treated as if he did have full blown CF in the beginning, and I believe this was done as a precaution. It is my understanding that the earlier you start treatment the better because you have less lung damage to start with. I am sure you doctor is just trying to prepare you and your son. My adivce is to continue with all of the testing until you get some answers. Don't stop until you get answers, and if that means seeing a different doctor so be it. Best of luck to you!
Velvet
Mason born 10.05.04
Velvet
Mason born 10.05.04
I agree with Julie and Velvet that you should be persistent and get more testing done. The Ambrey Genetics test is the most all-conclusive test for CF gene mutations. If your child has rare mutations the results may take up to six weeks, but a definite answer is worth the wait.
We were also told at clinic that some people with CF do test negative on a sweat test. It's rare, but it happens.
I think it's great that your doctor is referring you to a CF center. At least he/she is treating the symptoms despite the lack of diagnosis. Good luck and I hope you find some answers.
Maria (mother of three daughters, the youngest Samantha w/cf)
We were also told at clinic that some people with CF do test negative on a sweat test. It's rare, but it happens.
I think it's great that your doctor is referring you to a CF center. At least he/she is treating the symptoms despite the lack of diagnosis. Good luck and I hope you find some answers.
Maria (mother of three daughters, the youngest Samantha w/cf)
I also agree about more testing.
Even if your son cannot be diagnosed with CF conclusively, I don't think there's any harm in him attending a CF clinic. His symptoms are dealt with on a daily basis by CF doctors and they are probably the most qualified and experienced to deal with people with multiple symptoms including pancreatic insufficiency and lung infections. It's definitely better to be safe than sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">
Even if your son cannot be diagnosed with CF conclusively, I don't think there's any harm in him attending a CF clinic. His symptoms are dealt with on a daily basis by CF doctors and they are probably the most qualified and experienced to deal with people with multiple symptoms including pancreatic insufficiency and lung infections. It's definitely better to be safe than sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">