Absolutely, ask for the sweat test. Demand it. My son is 13 years old and was diagnosed with CF at the age of five weeks. I am still thankful for our pediatrician that immediately tested him for CF.
My son has had three sinus surgeries. Oxicillin is a nebulized medicine (antibiotic) that seems to be his only relief between surgeries. His constipation has been a LONG battle.
Most people who are familiar with CF can spot a CF patient a mile away. If your educated friend suspects, please do not stop with the blood test. Costs is the only reason why doctors have began ordering this blood test instead of the sweat test. Good luck!
Thanks for the replies. I have one more question. As I said before my daughters toes look kind of clubby but not her fingers. I was thinking the other night and remembered how when we go to the store alot of times she will tell me her legs are tired. Or even sometimes on walks. I haven't paid too much attention because I figured this was her way of saying she was bored and wanted to go home. But now that I think about it maybe they are tired. Would this be an indication of anything? It's been 3 weeks since the blood test and I'm STILL waiting for the results! I hope it won't be too much longer- wish I'd just done the sweat test.
I was wondering if anyone can tell me why more people haven't replied to this post. I see alot of people have looked at it and it seems like there are alot of knowledgable members here so I really thought more people would respond. Is it that no one wants to scare me? Or that I'm new here? Do you all get tired of people like me asking "Is this CF or not?" Not trying to be rude.... I'm just a mom looking for answers.
Hello Ann and welcome to Healing Well! Sounds like you have a lot on your plate right now. CF can present in so many different ways. The doctor looks at the whole spectrum of symptoms and test results to come to a diagnosis. It sounds like that is what they are doing, eliminating other causes. I know how frustrating it can be waiting and waiting for results and having more tests.
As for the blood DNA workup, my son's mutations have not been found as of yet (he had 2 different labs do a workup) last year. His pulmo is not concerned right now in finding his mutations as there are more being discovered every day. My son had two positive sweat tests and several other symptoms that lead to his diagnosis. I will say this, I pushed for testing from his pediatrician. I knew as a mother that something "wasn't right", trust your instincts and be your child's advocate and voice.
Wait for the blood test results and in the mean time, yes, demand a sweat test (make sure it is done at an accredited CF center/hospital). Oh, my son is the same way with his legs being tired, I too wonder if it real or just his way of wanting to go home (he is my homebody and hates shopping, unless it's for him :)
Good luck and keep us posted.
I took my dd to the ENT (not the dr that ordered the CF test). I told her I was waiting for results and told her about her toes and her legs getting tired. She said, "she doesn't look like she has CF. And club toes/fingers usually don't show up into the disease is pretty far along. So I would be very surprised if she has it." Is this true? Can drs look at a patient and tell. Is it possible to have clubs toes without club fingers and also without having severe symptoms or knowing she has CF? Thank you again for the replies.
I am sorry you are still unsure. I wish you luck in your pursuit of an answer. There would be no harm in asking for a sweat test as it is a short harmless procedure. Sorry your family have been unweell. Hope you have a good Christmas.