I had a very unusual call and got to speak with the CF director at Boston Children's yesterday. We have a child with crazy sinuses and is a carrier. I had a number of questions about nasal potential difference testing as he had a "normal" sweat test of 10 and 11. The director told me that you can never say someone has a normal sweat test. You can say that a sweat test is not indicative of CF but you can't diagnose on just that. To determine if someone has CF you have to walk through a number of different things like genetic testing, stool testing, lung x-rays, cultures, and medical history to come up with a diagnosis. I was relieved to hear that as another CF center told us "he has a normal sweat test, isn't that great! You can go home happy now." No, I can't I still have a sick kid and no clear path forward!
I'm feeling better about going to Children's to have an honest discussion and thorough eval to see where we really are. We are also seriously considering participating in a nasal potential difference study at Children's Hospital of Philadelphia: <a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov/ct2/show/NCT00589745
">http://clinicaltrials.gov/ct2/show/NCT00589745
</a>
I hope you are able to get some clear answers. Don't stop asking hard questions. Also I found it very helpful to Google for medical journal articles on atypical CF, nasal potential difference and such. I read the abstracts and if I thought something looked really good I asked our doctor if he could order an article for me. Then I highlighted all the stuff that seemed to line up with our son and talk to the doctors from that viewpoint. The European medical journals have a lot of info. Its slow reading and I certainly needed a dictionary at hand but it has opened up doors that wouldn't have otherwise been open.
Best wishes on this journey!
I'm feeling better about going to Children's to have an honest discussion and thorough eval to see where we really are. We are also seriously considering participating in a nasal potential difference study at Children's Hospital of Philadelphia: <a target=_blank class=ftalternatingbarlinklarge href="http://clinicaltrials.gov/ct2/show/NCT00589745
">http://clinicaltrials.gov/ct2/show/NCT00589745
</a>
I hope you are able to get some clear answers. Don't stop asking hard questions. Also I found it very helpful to Google for medical journal articles on atypical CF, nasal potential difference and such. I read the abstracts and if I thought something looked really good I asked our doctor if he could order an article for me. Then I highlighted all the stuff that seemed to line up with our son and talk to the doctors from that viewpoint. The European medical journals have a lot of info. Its slow reading and I certainly needed a dictionary at hand but it has opened up doors that wouldn't have otherwise been open.
Best wishes on this journey!