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Hi I wanted to give an update. They DID check for all mutations and she has none. However they are concerned with her intermediate test result and want to do the sweat test again. They said there other rare things that can cause an intermediate sweat test and if she has an intermediate test...

Thank you for sharing your story!

Wow well if that is the case, then what is the point? Why wouldn't they check all of it at once. Makes no sense. I am definitely going to check into this on Monday. Thank you guys for your help!

They just said they tested for all the common forms and it came back normal. And then they sent it out again to test for more rare forms and that it would take 6 weeks.

Thanks for the info and opinion. I wish it was as easy as just making an appointment, but we need a referral for insurance to pay for it, and I know they won't put in a referral for it until we get the genetic results back. I will definitely keep this option in my back pocket though. Would you...

No, she is being seen by a pulmonologist. And we are seeing a GI that is CF certified next week. I asked and asked about seeing a CF specialist and they just kept telling me that Dr. Houser in Pulmonology was who we were going to see. I think they wanted us to see her and then if my daughter's...

They did culture her sinuses once before we knew about the possibility of CF. It came back with Haemophilus influenzae (the good kind - whatever that means). Recurrent infections include G-tube site infections - cellulitis, the sinus infections, and getting sick a lot. She's had no respiratory...

Thank you, so good to hear! so far we've had excellent care here.

Thank you. I guess I am so afraid that this isn't the answer (not that I want her to have CF) and that we will be left at square one and not know what to do. No, the doctors really don't know what to do at this point. We see her GI next week for the first time here so I'm hoping that will get us...

Hi, I am new here and hope this is the right place to be. My daughter is 17 months old and has a long, complicated medical history including severe reflux, aspiration, lyrangomalasia, Failure to Thrive, severe central and obstructive apnea, low muscle tone, many sinus infections, and wears...