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View Full Version : Help, please, I'm worried


twins2sets
02-10-2005, 03:09 PM
Hi, I posted last week about my small daughter getting a sweat test done. Well her dr called this morning and said she was borderline - he said she was a 44. She has to go next week again to get retested. Can I ask your experience on levels and is this a legitimate worry or are there many different variables that could cause a false positive or borderline result? Please respond quickly if you can...I can't stop thinking about this.

Ratatosk
02-10-2005, 04:30 PM
I'd ask for genetic testing -- a blood test in addition to the sweat test. We had to wait almost a week for the test results 'cuz they were sent to a major testing facility. The sweat test was painless and only took an hour -- results were back in a couple hours, but DS had normal levels with his sweat test -- think it was 35 or less. But he has CF.

They refer to the sweat test as being the "gold standard" to determine CF, but I hear from more and more people how difficult it is to determine if the levels are borderline or normal.

BYHOPE1113
02-11-2005, 10:15 AM
Definately ask for a genetic test!!! Have them test for CF but also any known polymorphisms.

My daughter was having lots of problems that looked like CF so her doctor did genetic testing after a normal sweat test. My daughter tested negative for CF but positive for a polymorphism M470V. Ask your doctor to explain what a polymorphism is. If they can't, then find a doctor who can. Our doctor is a CF specialist who also see Asthma patients so she knew exactly what to ask for when she ordered the test.

Good Luck. By the way if you have more questions, I'd be glad to share more information from a Mom's point of view if you want me too. My daughter has some of the symptoms that CF patients have but she doesn't have CF.

PS. - I've been told Ambry Genetics in California is one of the best places to test for CF and Polymorphisms because they can test for so many different strands. That's where we had ours done.

 
 
 




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