Hi there! My 20 month-old daughter has had frequent respiratory issues and was finally given the diagnosis of asthma about 2 weeks ago. When the MD told me we needed to test for CF, I went online and read all I could and thought, "wow, that is my daughter". My daughter underwent sweat chloride testing last week and it came back at 69. The nurse's exact words were,"We don't think she has CF, but the test will need to be repeated". In the meantime, we have an appointment scheduled with a pediatric pulmonologist. Everything that I've read and heard has pointed to the fact that this is a positive test and at this point, I am thinking that there is no doubt that she has CF. Am I wrong? Having a diagnosis would be more helpful at this point so that I can prepare myself and get ready for what lies ahead.
You're correct -- if there's ever an error with the sweat test it's with giving a false negative, not the other way around. I would push for genetic testing. At least with a positive diagnosis they can begin to treat your child's symptoms and keep her healthy. It's important to find an accreditted CF facility, too.
Keep in mind while researching CF that a LOT of the information is outdated. I well meaning friend gave me a book a couple years ago that was copy writed 1997. Life expectancy has increased significantly and new drugs have come down the pipe within the past 5-10 years. The cystic fibrosis foundation is an excellent source of information -- cff accreditted clinics are located in south bend, fort wayne and riley in Indianapolis. The local chapter office for your state is located in Indianapolis as well.
Thank you so much for your response. We met with the pediatrician today and asked her this question. She said that "our" lab makes the cutoff for CF diagnosis at a sweat chloride level above 80 (I have not read this anywhere myself...)
We have a referral to the Children's Hospital Pulmonologist on 4/28. Since this seems like an eternity to wait, I asked her if there were any more tests that we could do to rule out/rule in other diagnoses. She sent us for a chest x-ray (my daughter has never had one despite all her problems). She also said she would contact the pulmonologist to see if there was anything more she could do until then.
Once again, thank you for your response. We have already had such overwhelming support from everyone we have come into contact with...
From what I understand 40-60 is considered borderline. My son's was a normal 32 and he DOES have CF, so I tend to be a little wary of sweat tests.
One thing you could ask for while you wait is a cf culture. Being she's so little, it would have to be a simple throat culture rather than a sputum culture -- unless you can actually get her to spit mucus in a cup. They would test for common CF bugs that normal people don't normally have.
DS cultured nonmucoid Pseudomonas A at 3 months. So for us, it really hit home that he DID have cf.