Our 2 year old daughter just had a sweat chloride test done and the results came back at 60. I had previously done some research and found 40-60 to be considered borderline, but the doctor who read the results just said it was negitive and it was fine. But the more information I find and the more people I ask it seems maybe I should get a second opinion. I have been told many times by now(by people other than the doctor) that 40- 60 is borderline and she should be retested, but I am hoping that someone knows something that that I have not been able to find yet. The doctor that we saw is a pulmonologist, and like I said he seemed totally unconcerned by the result. If anyone has any information it would be greatly appreciated.Thanks
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Swaet Chloride test results ???
- Thread starter anonymous
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AbsintheSorrow
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I don't know anything more than you've been told, but I would definitely suggest getting a second opinion. The test needs to be done again.
The allergist that originally tested our son said that anything under 40 is negative, anything above 60 is positive, anything in between is borderline. He also said that all borderline and positive results warrant a second sweat chloride test. We see a pediatric pulmonologist at an outreach clinic in another city but he is affiliated with a children's hospital/cf center. Both he and his nurse practitioner also both said that they sometimes redo negative tests that were performed at somewhere other than a cf center (or a hospital trained by a cf center) if the child has significant symptoms suggesting cf. They also retest if enough sweat wasn't collected. Also, the pulmonologist follows up all + test results with genetic testing. He will also do genetic testing on any child who falls in the "borderline" category like your daughter if the child does not test negative at least one time later by sweat chloride. Just out of curiosity, is your pulmonologist an adult or pediatric pulmonologist? That could make a difference. Also, older doctors may tend to not be up on the latest guidelines. My understanding is that most children with cf usually do have higher sweat chloride values (like your pulmonologist suggested) but that children with milder forms of the disease or with rare mutations often have lower values and are the ones that they typically have more difficulty diagnosing. Last thing, I'm not sure on this, but I think some other conditions can cause a child to temporarily test positive or borderline and that's why they always follow up both of those with another test, just to be sure. Hugs. I hope your daughter does not have cf!
I am no means a doctor or know the technical details of sweat tests, but I will tell you what I do know from experience and talking to other parents and patients. I manage another CF support group. There are several people there who were not diagnosed until later in life, mainly because of DOCTORS ignorance. yes doctors don't know everything, sad but true. One man was sweat tested once, it said it was negative, but he still had all these problems, finally when he turned 30 they tested him again, many times, and finally found that he had CF. He is kind of bitter towards those doctors who rules out cf in the beginning because he says he can't help but feel he would have better health now had those doctors did more testing. I have been told by many people that they were tested just ONCE when a child and it came out neagtive only to find out later in life when they were sicker (something that could have been prevented) that they had cf. Its sad that some doctors test once and then either think a person is lying for attention or jsut ignore the problem, these people said this is what happened to them. They said that they never recieved the right kind of medical treatment, always put on the same medication that only worked for a little while. Not until they were diagnosed with CF did they ever recieve good medical treatment. You can ask them yourself I will leave a link.Sweat tests can be pretty accurate IF done correctly. They are the easiet test to screw up. I had 5 sweat tests done on me. The first at a regular hospital lab, it came out negative but luckly my doctor knew that it was wrong and said do it again. The second came out positive. They sent me to Houston a CF center, positive, then I went on to Dallas as it was closer and they did two sweat tests, both postitive. So had my doctor went by my very first test, who knows where i would be now. There is also "Atypical CF" hard to diagnose. Sweat tests come out in the normal to borderline range. Usually a person with Atypical CF has just lung involvment to slight stomach. But it is also very different vary person to person. Only lady's child has been tested and tested and genetic tested for over a year and a half. Always borderline. The doctor knows the girl has CF, she has all the sypmtoms and then some. All other testing for other thing came back negative I believe, I forget. But they have had to do Ambry testing and a extended mutation search and can only find one mutation. So jsut because one test says its negative it doesn't mean it is. True your daughter may not have CF. But don't go by one test. I know CF is scary and you don't want another test in fear that it may be positive, but your daughter will be better off if you get a second opinion, even a thrid. I have seen to many people diagnosed late in life wishing they had knonw sooner for a healther like now. If you test more and it comes out postive, your daughter will have the best care there is. There is so many medicines, even new ones coming out that help prevent lung damage and fast progression. If you test again and it comes out negative, wonderful. You will have peace of mind either way, sure maybe a postive result peace of mind may take longer but at laest you will know what is wrong. AB
Although 60 falls into the "borderline" area, I would have the test redone and redone at a CF Center where they can read the results correctly and without error. You can always get a false negative with CF testing unfortunately and it has happened before. Have your daughter retested just to be sure!
Our CF clinic says anything under 40 is negative. They leave it at that. They really don't even talk about borderline...However, I think the key is being tested at a CF center. They are the expert at the test and reading the results.Since the test is painless (although a bit expensive), it is worth repeating to know for sure.good luckChristiemommy to twins malachi wocf and mylee wcf
Dear AnonymousI am 29 w/cf, I have a twin brother who also has CF. When we were 6 he had a bad case of pneumonia and was tested for CF at non CF center and it came out negative. We were very healthy kids other than getting bhronchitis every year, we were active in sports. But when we went to college we were both to busy with school and work to play sports. Not being active things started to change the cough and all the other problems started. After a while I had enough and went to see a lung specialist who sent me for the sweat test and low and behold it came out positive my twin immediately had his done and it was positive too, we were 22 years old. GET A SECOND OPINION.