Recent content by jabug8

They did full gene test and found the 5t allele. Right now thats the knly thing they found. They did another gene test to look for another mutation or a partial mutation which ive never beard of either. Her dr has on all her records that she has a an atypical form of cf. She met with her ent...

Has anyone ever had the phrase atypical form of cystic fibrosis thrown at them?

So a few months back i posted about my daughter and these sweat test. Finally got in to see the CF doctor personally. He looked at my daughters results ans told me flat out he was very baffled on every thing. He said that he has never seen someone have 2 sweat test done at different times and...

Baby girl had her sweat test done today and came back once again borderline. Waiting on her blood work to come back. It's been almost a week now. Hopefully it will be back soon. Not sure where we go from here. We are in the process to getting a new pulmonary dr. Can anyone tell me....on an...

The first was positive of 67 these last 2 were borderline of 43 (the other 60 something was a wrong person!!) But these last 2 were at the CF center! They are doing this last one told me if it comes back before the blood work, comes back borderline or higher again then we will see the center...

?? great... We are having such a hard time. She has had 3 sweat test. First came back positive. Second n third were borderline so now we have to repeat yet another ?

Ok. I'm guessing my daughter was tested for 32? Her order said 32 n had something after it. She goes for a second sweat test Tuesday

So if my husbands dad doesn't have a mutation then my husband wouldn't have one which means our daughter couldn't have one correct? (Given my husbands mom doesn't either) thank you! I deff have a better understanding now

my daughter is in the process of multiple sweat test for a diagnosis and just had her blood work done today. I have a thread in newly diagnosed on everything that is going on with her. I guess Im mainly here to ask about gene mutation. from what I have read online about cystic fibrosis is the...

my daughter is in the process of multiple sweat test for a diagnosis and just had her blood work done today. I have a thread in newly diagnosed on everything that is going on with her. I guess Im mainly here to ask about gene mutation. from what I have read online about cystic fibrosis is the...

Update: sat on the phone with doctors allllllll day yesterday fighting for answers. so according to John Hopkins CF dr, the way they tested her sweat was different from when they did it here in town for the first one. The high number that were in the 60's was tested different then the John...

Thank you. I posted a thread earlier today under here. Explaining everything. She had 2 more test done yesterday and both came back positive.the CF center that did the tests wants me to talk to pulmonary to see where we go from here. Her pulmonary Dr is being very arrogrant and will not sign the...

right that is everything I have read. I was not very happy with this Pulmonary doctor he was very rude. Everything I am reading is telling me she is positive. he tells me im over reacting and that there is nothing wrong that my daughter is just constantly sick. says that it is unlikely that she...

ok let me start over hopefully it will help. sorry its so confusing. Trust me im confused too. Ok highlights to help. daughter has had a very mucus cough and congestion for 3 months now. Took her to primary care dr, said it was asthma. cough never went away got worse. sent us to Pulmonary...

The last 2 were done at john hopkins CF center. The nurse from John Hopkins told me the results. Said I had to call her pulmonary Dr (one who originally ordered CF test) that's when her pulmonary Dr told me he would stop testing. What does a gene test process consist of?? Couldn't john Hopkins...