Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 , My daughter had her sweat test done at 3 weeks. Make sure you have it done at a CF center. You can go to www.cff.org to find one in your area. Good luck, Colleen Mom to Elyse 3 w/cf and one on the way 6 week old I am waiting for the genetic test result for my daughter. She has a rectal prolapse and they said CF would most likey be the cause. She is eating quite a bit. about thrity to thirty five oz a day. She is gaining weight fine but she has had a cold for about 4 weeks now. They said its okay but i would think she would have gotten rid of it by now. I am worried about what that test says. I have two other children who do not have it. I am scared she has it . I really need some support if someone can help. How relieable is this test? She had a sweat test but the doctor thinks she might be to young. Can this be true? Help ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ ---------------------------------------------------------------------------- -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Dear , I hope your daughter doesn't have CF but if she does this is a great place to come. Everyone is very helpful and supportive. She might not be too young for a sweat test to work. Having a cold for 4 weeks doesn't sound good. Have they put her on any antibiotics yet? If a cold doesn't go away after a week or two it could be a secondary bacterial infection which would need antibiotics. Even babies can get sinus infections. It could also be allergies but she seems a little young for that. That is good she is eating and gaining. Please let us know about the sweat test and the genetic testing when you get it. In the meantime we are here for you if you have any questions or just need to vent. love, M mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 , A genetic cf test is an accurate test for cf, but it depends on the type of test that they requested. Some genetic tests only test for 25 mutations, some for 87 and some for 1000. My son has two unusual mutations and a basic test would have been inconclusive. Find out which test they used. If the test comes back as no cf or only a carrier, I will still have her sweat tested or have a test done for more mutations. I hate to sound negative, but if your daughter has cf a correct diagnosis will put her on the path to better health. I live in IL too. Which cf center is doing the testing or is your pediatrician doing it? Sara - mommy of Zach 23 months > I am waiting for the genetic test result for my daughter. She has a > rectal prolapse and they said CF would most likey be the cause. She > is eating quite a bit. about thrity to thirty five oz a day. She is > gaining weight fine but she has had a cold for about 4 weeks now. > They said its okay but i would think she would have gotten rid of it > by now. I am worried about what that test says. I have two other > children who do not have it. I am scared she has it . I really need > some support if someone can help. How relieable is this test? She > had a sweat test but the doctor thinks she might be to young. Can > this be true? Help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2004 Report Share Posted January 14, 2004 Hi First of all let me say I hope all is well for your baby. You said she had a sweat test right? Do you know what the outcome of that was as far as numbers go? My son had a sweat test at 3 weeks and it came back positive for CF. The CF center (Childrens hosp in Boston)also sent his blood work to ambry to id his mutations. I hope your baby's test is negative but if it's not you have come to the right place. Mom of 4 boys one with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2004 Report Share Posted January 15, 2004 Hi , A normal sweat test is 0-40, borderline is 40-60 and positive is 60+. So if they did the sweat test correctly she is negative. Did you say it was done at a CF center? I know this was discussed but I don't remember what you said if anything. I believe it takes about 2 weeks for the genetic testing to come back. How accurate depends on where it was sent. A company called Ambry tests for over 1000 mutations and is about as close to accurate as we have. There are still some people who have CF and have no known mutations but its rare. If it was sent elsewhere it may not be accurate. I guess if her symptoms continue you will need further testing to determine if it isn't CF, and to see what else it could be. I wish you good luck and like I said I hope your baby doesn't have CF, but if she does it isn't a death sentence. love, M Quote Link to comment Share on other sites More sharing options...
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