Our daughter, now 1, is having trouble gaining weight and SOMETIMES has a cough. It doesn't appear to be thick though. Anyways, our doctor said we could do the CF test at our request. We did. The first one they couldn't get enough sweat on and the second result just came back. They said it was 37, 3 below borderline. They said since it was close to borderline, they wanted to test again. My wife is now worried to death that she has CF. Does anyone know why they would retest when it came out negative? I mean, if 37 means retest, then shouldn't 37 BE BORDERLINE! What were your children's results?The facility that tested her is one of the top in the nation for children (DeVos Children's Hospital).
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Sweat Test Results - HELP
- Thread starter anonymous
- Start date
AbsintheSorrow
New member
You can multiple false negatives on sweat tests. You can never get a false positive though. It's always safe to retest. It won't be the end of the world if your daughter has CF. And in the end it will be better to know ASAP if she does because then she can get the proper treatment. So let them restest if they want.
My son was dx with CF at 10 months. His number was 115. He also had troubling gaining weight, he was having bowel movements after each feeding (the smelly loose ones), his eyes were sunken and dark, just did not look good overall. However, took them nine months to finally get the CF test done. They did the test twice on our son and both times the numbers were over 110. To be sure I'd ask to have the test repeated. Can never be sorry to be sure your daughter is be treated correctly. Good luck.
Thanks for both of your help. She doesn't look unhealthy at all, so that is a good sign. In fact, I spend all the energy I have just to keep her from bouncing off the walls. Its like a pet monkey <img src="i/expressions/face-icon-small-smile.gif" border="0">She retests on Tuesday.
My son's bowels movements have from his birth looked different from any other than I had seen and the smell was and continues to be overwhelming. His stools also have never been solid, always loose. It is something that his doctors have been trying to change his medicines around to control better, but we still have not gotten the answer to this question. Since his dx my son looks healthy and does not appear sick anymore, once we were treating him correctly those things improved. Although we still have the "poop issue". He also is salty, can burn your lips if you kiss him when he's really sweaty. Something that I noticed early on, but thought it was normal as sweat is salty.Please let us know how the test comes out. My thoughts are with you for a good result.
It looks like your daughter tested negative but so close to the borderline range that they wanted another test. When a child tests between 40 and 60 genetic testing is recommended.The following I found for you at this website: www.cindys-friends.comThe laboratory measures the concentration of chloride (and/or sodium). A positive test is one where the concentration of chloride (or sodium) is 60 milliequivalents per liter (mEq/L) or higher. Almost everyone with CF has values between 60 and 100 mEq/L. A negative test is one where the concentration of chloride (or sodium) is 40 mEq/L or lower. Very few people have values between 40 and 60 mEq/L. Once a test result is positive, it is always positive. Sweat test values do not change from positive to negative or negative to positive as a patient grows older, or when the patient has a cold or other temporary illness. There are no restrictions on activity or diet or special preparations before the test. However, one should not apply creams or lotions to the skin 24 hours before the test. All regular medications may be continued and will have no affect on the test results. Sweat test results are usually available to your physician the next working day after the test is performed. In a small number of cases, the quantity of sweat obtained is not sufficient to give an accurate result, and the test may need to be repeated. In a small number of cases, the sweat test results fall into the "gray zone" range, meaning not having CF and indicative of CF. In these situations, repeat sweat tests, as well as other diagnostic procedures, like genetic testing or measuring nasal PD, may need to be carried out. These can only be done after consultation with a physician.
Hi There,Sorry to hear that your wife is worrying herself to death but it does sound like everything is fine.My son's sweat test came back at 69 for sodium which they say wasn't to high but still a postive is a postive.His Chloride however was quite elevated with a result of 83.If in the end it comes back close to borderline again then maybe you should ask for a genetic blood test?Not all children with CF are really sick though, as many people have been diagnosed later in life recently so even though it would be nice to not have to worry about it, knowledge is power.RebekahMother to Matt 16mths w/cf
We got the 2nd result back and it was 18, which is great. This time they were able to get a decent amount of sweat from her too. Thank you to all of those who have helped get us through this nervousness. My wife and I will pray for those of you who have CF or have children, etc. with it.As for the question about testing times, who had results in a few hours. The only thing that should take long is when you have a blood test.
You're right about the test only taking a few hours but many take 24 hours to get the results because they wait to actually run the test. When my son tested I was told that they run the test around 2:00 pm on certain days. One day his sweat was collected at 3:00 pm so they didn't run his test until the next day at 2:00pm. We got those results around 3:30. The same thing happened when they ran his confirmation test. It just depends on the center that runs the test. I am sure they have so many different samples to run, they have to follow certain orders/procedures so that mistakes are reduced. When they collect your child's sweat, they probably store it for a while until they have time to process it. If the timing of the test is good (right before they run the collected specimens), you could get lucky and have your results in a couple of hours.I am so happy for you that your daughter's test was negative! Take care!Jenamom to 3 yr old with CF
Oh - did they say why your daughter has to be retested? Was the test run at an accredited CF center?Maybe her results were borderline.... Maybe they lost the results? I can't imagine it taking 2 weeks, unless they held onto your daughters sample that long before testing it. They probably made a mistake and either forgot to run your daughters test or lost the sample (humans do actually run these test and mistakes are inevitable). When you have her retested, ask them specifically when they are going to run the test. They SHOULD be able to tell you when. Then you know when to start placing a call to your doctor.Jena
Hi Jena My name is Norm the father of cassandra (The ones who wated two weeks for test results) We did get the results and the reading was 60 thats why they want to resest .........Can any one Tell my wife and i what this number means? Imean is it the"grey area" or would it indicate a positive result? The nest test is this comming monday Could the results be totally Different? Im not sure where the test is performed but my daugthers Sweat sample was taken at a hospital in peterbourght........thank for any input.
Norm,Check the reply 7 messages up from yours on this same thread. It tells you all about the numbers.It is worrisome that her first test results were 60. Although that result falls in the "Borderline" range... it is on the high end. Anything OVER 60 is considered positive for CF. They aren't going to diagnose CF with a result of 60. That is why they want to retest. If her second test shows a result between 40-60, they will probably do a genetic test (but could possibly try a third sweat test). Even if these new results show greater than 60, they still might want to repeat the sweat test as a confirmation (since your first result was in the grey area). When she goes in for the sweat test, ask them when they are going to process her sample. I am surprised that it took 2 weeks the first time around. VERY IMPORTANT: make sure that she is being tested at an accredited CF center. If not, find one close by and have her tested there. Believe me (and many posters on this board), you want to get your result from a trustworthy source.I am somewhat surprised that you aren't taking her next test until Monday. Was that your choice or the hospitals? It seems unfair to put you through the worry for so long. It was horrible when we were learning that our son had CF, but at least we knew quickly. His first sweat test was on a Monday (got the positive result on Tuesday), he was retested Thursday that same week and got the 2nd positive (confirmation of CF) on Friday. That next Monday, just one week after his first sweat test, we went in to meet the CF team to have more tests run and to learn more about caring for our son.I will be thinking of you and your family. This website is a great source for information and support. Feel free to ask ANY question. Somebody will be happy to help.Wishing you and your family good health,Jenamom to 3yr old with CF
MerryBerryFairy
New member
This is very like my tests. Even though i had the test when i was 12. It came back negative like your daughters, but it was a high negative and it turns out that i have CF, but i VERY mild case.....the 2nd person in the USA to have this mild of a case. Your daughter may have this same thing, but its not very likely!