My husband and I are extremely confused. Our 3 year old son has just had 2 sweat tests, which we were hoping would rule out CF (the only symtom he has is a rectal prolapse) however, the first test came back as 72, and the second as 47. We don't understand how these results could be so different ?? His doctor said that diagnostic is usually 70+, and that his 47 is reassuring in comparisson. He now has to go for a third test tomorrow to confirm or rule out CF. I really dont know what to think, is the 47 reassuring ?? or is the 72 the more reliable of the 2 ?? Should we ask for blood tests reguardless of the 3rd results just to be sure ?? and how come they don't just do bloods in the first place ??Sorry for so many questions, but I feel like I'm stuck between a rock and a hard place, I don't know anyone with CF, and so no one can give me any information !!Thanks in advanceLiz
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Confused !!
- Thread starter anonymous
- Start date
First I wanted to ask where are you getting the sweat tests done? The reason I ask is unless it is done at a CF center, you can not be sure of how accurate the test is. Its a fairly easy test to mess up if it is not done right. Good luck, I know this must be a very scary time for you...and I hope someone else can help you out a little more than I can.
Hello,I had my son diagnosed via blood tests, when he was 3 weeks old.However only recently did we have the sweat test done, and he came up at 66.In this country (New Zealand) anything over 60 is positive.I have talked to many people and am also confused, overseas they say above 70 is positive so I wish there was someone who knew exactly what the points were?We have recently had people diagnosed as CF but with no symptons and some of these people are in there 50's and 60's.My son is pancreatic insufficent so that rules him out, but that has been the only sympton of CF so far.I am also a very confused parent??Rebekah, mother to Matt 9mths CF
Hi, Charlie's 3rd test came back as 41, the doctor is now positive that Charlie is 'all clear', however I have asked him to run some blood tests just to be sure, as I am very unsure about how reliable these sweat tests are, and with the fact that different 'cut offs' are used in diferent places !!Liz
I have actually not heard of different cut off numbers anywhere. under 40 is negative, above 60 is positive between 40 and 60 is boarderline. So you child has had 2 boarderline tests and one positive test, I think that it still rule CF IN as a possibility. I would DEMAND Genetic testing for all the CF mutations (not just the common ones, because the not so common ones are the ones that usually have low or boarderline sweat tests) There are over 1000 mutations. Request tests for them all!this is hard but if he has CF, the sooner the diagnosis the better, so you can get him everything he needs.I hope itis not CFAndrea
I agree with Andrea. I am a 19 year old with CF, but they didn't realize I had CF till I was 14. The hosptal where I was born screened all babies for CF as routine, but mine was negative. Then as a young teen maybe 12 or 13 an ENT thought I may have CF, but did a test to see how well my celia worked, but since they were in perfect working condition in my sinuses he assumed that rules out CF. It finally took a doc who wanted to figure out what I had 100%!!!! I am so thankful for him, its so hard to believe that I slipped through the cracks for 14 years with all the classic signs of CF (from about age 6 or 7 I had ALL the signs) and with the most common mutation. Although I feel grateful because I do not think my late diagnosis was too harmful to my health long term because I had minimal lung damage at the time of diagnosis, it sure would have saved a lot of stress and wonder had I been properly diagnosed the first time! Never let a doctor tell you to rule something out unless he is 100% sure that it could not be the problem...good luck and I hope you get a sure answer soon.Emily 19/wCF