So last week I posted a thread on everything going on with my daughter. Long story short we had one sweat test done, came back elevated/positive for CF. Pulmonary doctor sent us to a CF center had another sweat test done. They actually did 2 different types yesterday. Results came back borderline/positive with these 2 test. Her pulmonary doctor told me I need to stop worrying he doesn't feel she has CF he is done testing. Told me he doesn't know what's wrong and we should just go on about our life as she just has a cough!!! ??? any ways I guess I really like to know other parents input on what I should think. I by no means would never wish for anything to be wrong but I can't keep making my self sick worrying. If her levels are elevated 3x times shouldn't that mean something???? Has any other parent been threw this?
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struggling for answers
- Thread starter jabug8
- Start date
Aboveallislove
Super Moderator
http://www.cff.org/aboutcf/testing/sweattest/
huh? That makes no sense assuming you are in u.s. as your profile shows. According to cff above 60 is positive see above. I'd get a physical copy of the results and call John Hopkins assuming you are in Maryland or Children's National see http://www.cff.org/treatments/CareC...tion-accreditedCareCenters/index.cfm?state=MD for contacts and tell the cf center that she's had three sweat tests with all over 60 and last two at a cf center but doctor said she doesn't have cf and is done testing and hasn't run any genetic testing. say and you want to see one of their doctors and how do you arrange.
huh? That makes no sense assuming you are in u.s. as your profile shows. According to cff above 60 is positive see above. I'd get a physical copy of the results and call John Hopkins assuming you are in Maryland or Children's National see http://www.cff.org/treatments/CareC...tion-accreditedCareCenters/index.cfm?state=MD for contacts and tell the cf center that she's had three sweat tests with all over 60 and last two at a cf center but doctor said she doesn't have cf and is done testing and hasn't run any genetic testing. say and you want to see one of their doctors and how do you arrange.
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 order it? I'd hate to need to go find a new pulmonary Dr and feel like we are moving backwards to get answeres
Aboveallislove
Super Moderator
Ps in re reading it sounds like the pulmonology st who referred her to the cf center says he doesn't think she has cf. did you not meet with the cf center doctors so review the results? They should be handling the diagnosis not a pulmonolgist at another location. If you never met with the cf doctor from the cf center, you might start by calling the center she had the test at and saying you have the results and that they are positive and you want to make an appointment at the cf center to see one of their doctors. If it wasn't John Hopkins or children's national, I'd call them instead because those are the only t wo accredited in the mMaryland area.
Aboveallislove
Super Moderator
Sorry...I'm very confused. Which doctor said they were done testing? I thought her initial pulmonolgist wasn't at a cf center...so was he at John Hopkins? John Hopkins can order but you need the doctor to order so that's why I'm confused on which doctor said they are done testing. Can you clarify to see what might work.
Aboveallislove
Super Moderator
Pss John Hopkins own web site says over 60 indicative of cf. http://www.hopkinscf.org/what-is-cf/diagnosis/testing/sweat-test/.
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. Pulmonary did blood work for an autoimmune test and order CF test to be done here at our local hospital. Autoimmune test came back fine. CF test came back elevated/positive at 67. So Pulmonary sent us to John Hopkins CF center to have a second Sweat test done. We went to John Hopkins yesterday and had the second and third test done (they did 2 different types of collection) Today John Hopkins Nurse called me with results. The nurse said that they were borderline/positive which was one was 68 the other was 66. The John Hopkins nurse told me that because it was considered borderline that I had to call her Pulmonary doctor to find out if he wanted to retest, or to be seen by CF center. I called her Pulmonary dr and he told me that her levels are not up enough to be considered CF so he wont do any more testing. her Pulmonary is a completely different doctor.
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. Pulmonary did blood work for an autoimmune test and order CF test to be done here at our local hospital. Autoimmune test came back fine. CF test came back elevated/positive at 67. So Pulmonary sent us to John Hopkins CF center to have a second Sweat test done. We went to John Hopkins yesterday and had the second and third test done (they did 2 different types of collection) Today John Hopkins Nurse called me with results. The nurse said that they were borderline/positive which was one was 68 the other was 66. The John Hopkins nurse told me that because it was considered borderline that I had to call her Pulmonary doctor to find out if he wanted to retest, or to be seen by CF center. I called her Pulmonary dr and he told me that her levels are not up enough to be considered CF so he wont do any more testing. her Pulmonary is a completely different doctor.
Aboveallislove
Super Moderator
Okay...I don't understand why John Hopkins said borderline when cff AND its own website say it is diagnostic of cf if over 60. I'd call cf center back and ask to get an appointment with a cf doctor. How in the world a non cf doctor can say it isn't cf with those results is beyond me. Say you want a full gene test.
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 has CF because she didn't test positive at birth and because she never had signs until 3 months ago. what he doesn't understand is that my daughter was seeing a gastro dr because she was diagnosed with malsportion when she was 6 months old. I have always complained how she always sounded stuffy and clogged in her nose but drs just shrugged it off. the cough yes it just started in October but I have also read that not all children will get symptoms right away. that's why im just at a lost. I have this dr telling me nothing is wrong. But yet everything im reading is telling me differently. I have a daughter that is miserable. cant sleep cant breathe but no one will help. I don't want anything to be wrong but I just need help for my daughter. I had so many questions for the CF center at john Hopkins but because of weather being bad here they called with results and I couldn't talk to anyone to have anything answered
Aboveallislove
Super Moderator
I see a few options. First try to get an appointment with John Hopkins cf center cf doctors. See the webpage. Tell them you have a positive with two sweat tests from their center and want to work with one of their pulmonolgist s. if they say they need a referral even though the ran the tests and are positive, then call your bad pulmonolgist and tell him you want him to refer you to the cf center. If he refuses ask him to put in your daughter's chart that he has seen the sweat test results and that you requested a referral to John Hopkins cf center and he refused. Then I'd go to her primary care doctor e and ask him to refer you to the John Hopkins cf center. Or call the cff and tell them you have sweat test results from John Hopkins cf center and the results and that they won't see you if that's the case without a referral fom your,pulmonolgist and ask what you can do because the pulmonolgist says he won't test for cf even though over 60. Good luck.
Hi Jabug,
So sorry for the position you are in, but you are doing an amazing job of advocating for your daughter!!
I agree with everything Love has said. I am personally shocked that a sweat test over 60 in a child who is symptomatic is not at the VERY least enough for them to order the genetic testing, if not enough for a diagnosis. Ugh. I am also confused as to why they sent you back to your pulmonologist, when they've got her positive sweat test staring them in the face.
Keep at it, you'll get this!! Just continue to be assertive and demand answers.
Good luck to you and take care,
Autumn 34 w/CF
So sorry for the position you are in, but you are doing an amazing job of advocating for your daughter!!
I agree with everything Love has said. I am personally shocked that a sweat test over 60 in a child who is symptomatic is not at the VERY least enough for them to order the genetic testing, if not enough for a diagnosis. Ugh. I am also confused as to why they sent you back to your pulmonologist, when they've got her positive sweat test staring them in the face.
Keep at it, you'll get this!! Just continue to be assertive and demand answers.
Good luck to you and take care,
Autumn 34 w/CF
Heavens. Make an appointment with the CF Center. It's not likely coincidence that she's had pulmonary problems, and her CF test came back positive (borderline or not - it wasn't negative!) If they won't give you an appointment without your original pulmonologists blessings, call him/her and politely say Thank You for your recommendation that we quit testing but I would like to visit with the CF Center docs if its ok with you. Goodness.
Aboveallislove
Super Moderator
As always, I agree with Gammaw's approach/language! As I was told in lawschool and haven't yet mastered: You'll do better with a scalpel than a hatchet! (But if at that point he says no, I would then have him put it in his file!!)
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 Hopkins quantive test. so the test that the CF center did was border line. she was one point above border line. her number was 40 then. I was getting really confused on how she went from a 67 n so on down to a 40. the CF doctor explained to me that the 40 was a more in depth test?? so next step is she is to repeat the sweat test and also have a gene test done. he told me that in some cases it is possible that a child can have CF but test negative for it so that's why we are getting the gene test done. If this next sweat test comes back borderline or positive she will be seen CF. but if they gene test comes back as normal then we are back at square one to not knowing what Is going on with her. in the process, her pediatrician is transferring us to a new Pulmonary dr. she is not happy with our current one either so that is a good thing. so now its just still a huge waiting game thank you to everyone. This has been one very stressful struggle with this and even though we are going on 4 months with this I feel like im getting some where.
I'm so glad to hear this! Sounds like things are moving in the right direction. Glad your pediatrician is helping you get a new pulmonologist as well. The one you have sounds like he's letting his huge ego get in the way of admitting he might not be correct about your daughters health. Good job mom!
JustaCFmom
New member
My daughter started coughing when she turned 14 and didn't get her diagnosis until over a year later. She had NO HISTORY of any health/lung problems aside from fluid in her ears. I will be eternally grateful to the pulmonologist who sent us for that sweat test. Our family doctor couldn't understand why we were being told to do it. Our road was relatively simple because her sweat test was positive & the genetics came back positive also.
Her lung functions went from about 75% to over 100% with the proper treatment!
I hope everything goes well & you get the correct diagnosis. (How old is your daughter?)
Her lung functions went from about 75% to over 100% with the proper treatment!
I hope everything goes well & you get the correct diagnosis. (How old is your daughter?)