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Cystic Fibrosis Board Index
Pages: 1 2 Showing 1 - 20 of 33 for myfive. (0.028 seconds)


... My daughters was 48, but in Canada they do not send for the genetic tests unless she was above 50, which sounds ridiculous to me since they should leave a bit for error. Good Luck!!!!!!!! (32 replies)
... They didn't give me a number because the dr's office left the message that it was normal on my answering machine. I can call for the # tomorrow or monday. They said the ranges are 0-39 is neg 40-59 is borderline and 60+ positive (32 replies)
... I'd have to agree about finding out the number as well. (32 replies)

... Did they give you a number? 0-40 is normal, 40-60 borderline, 60-+ is positive... I'd also encourage genetic testing. DS had a normal (32) sweat test. AND it was done at an accreditted cf facility/children's hospital. (32 replies)
... It was done at the sweat lab at the children's hospital It is negative. (32 replies)
... Is the sweat test being done at a CF accredited facility? From what I have heard they are the only ones who know how to "properly" administer the test. Is the test in the morning? It is also my understanding that the results are available pretty quick so you might be able to get them today. I would put in a call to your pediatrician (or whoever the results get faxed to) that... (32 replies)
... Today is the sweat test, I am nervous. Hopefully after it is done the results won't take too long to get to the pediatrician's office. I think it is 1 day but where it is friday they probably won't know until next week. Only bad thing about having tests done on fridays. I will post after to let you know how it went. Thanks for all the advice. (32 replies)
... My son (who has CF) has only tasted salty to me maybe 3 times and each time it was when I kissed his forehead. So to answer your question, I don't know for sure if its all over but I don't see why it wouldn't be. Every time I see symptom lists I see "salty skin" listed. Let us know what happens with your daughter. (32 replies)
... Thank You. Do you know if the skin is just a salty taste on their forehead,Or is it everywhere like their arm etc. Thanks again (32 replies)
... I hope you can get some answers that will help your daughter. (32 replies)
... She is scheduled for this friday at our local childrens hospital that has a cf center inside. Thanks (32 replies)
... one more question. Did your children taste salty on their arm etc or just on forehead or face? Thanks (32 replies)
... Her gastro emailed me back and said I should speak with her pediatrician about the work up for this. But her ped didn't even know much about celiac I doubt he has kids with cf or even know the testing for it. He is a small practice not a chain. How would I ask something like this to him and do I ask a nurse,what do I say to get an appt or ask on the phone. I am so confused.... (32 replies)
... My 3 yr old daughter is sick alot too. She has had recurrent pneumonia and a ton of chest infections now she is phlemy even without being sick. But in the last 6 weeks she has had 3 chest infections. When she starts with a simple cold is goes to her chest everytime and she gets sicker. Thanks for the info I am waiting for her Gi to email me back, I asked him these questions. (32 replies)
... My son was always sick with respiratory infections and a few pneumonias. My daughter - I wrote about her in the first part of this thread -- chronic phlegm, chronic lung/respiratory infections, tired, white stools, etc., Just always sick. (32 replies)
... Can I ask why the doctor order a sweat test for your children,What were the symptoms or made him suggest a sweat test? Thanks Alot (32 replies)
... Yes, although they say that a sign is a salty taste when you kiss them. They can do a blood test which will show if they have the gene for cf. They test for quite a few, but not all. I think it is pretty thorough. My daughter was in the borderline range for cf on the sweattest, but because she was not over 50, here in British columbia, they do not send for the gene test. ... (32 replies)
... Usually if the sweat test shows borderline 40-60 or high 60+, then they'll do more extensive testing. They can order a genetic test, which test for the more common mutations or there are a couple of companies ambry and quest which test for hundreds of mutations. I believe testing takes about 1 to 2 weeks. I don't know what type of genetic blood test they did on DS -- got... (32 replies)
... I am asking because my daughter is seeing an allergist/immunologist next month. I was also reading that the sweat test looks for a large amount of sodium and chloride,I was looking at some past blood work my daughter had done and her chloride and sodium were at the highest point of normal. I don't know if that says anything or not but her skin sometimes is salty when I kiss... (32 replies)
... Problem is that sweat tests, which used to be considered the "gold standard" aren't necessarily accurate. Maybe if done at an accreditted CF facility; however, DS is a prime example -- his was a normal 32. His genetic blood tests showed CF. The neonatologist at the NICU ordered the genetic CF test for our child because of his symptoms. The sweat test was ordered by a... (32 replies)




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