Search:

Type: Posts; User: veggiebin

Search: Search took 0.00 seconds.

  1. Replies
    2
    Views
    3,919

    ENT in Denver

    Hello! Curious if someone could recommend a good ENT here in Denver. My daughter has been having horrible bloody noses that just donít stop and repeat several times a night. We have an appt at...
  2. We had two negative sweat chloride tests on our...

    We had two negative sweat chloride tests on our daughter, but the doc still sent a sample to ambry for genetic testing because of clinical signs. Two pathogenic mutations were found, on separate...
  3. Replies
    2
    Views
    919

    Fel - Thank you for the reply. The doctor is...

    Fel -

    Thank you for the reply. The doctor is suggesting it because her sweat chlorides come back low, we've had it done twice, but she has two rare mutations. Before doing any tests, the doctor...
  4. Replies
    2
    Views
    919

    Nasal Potential Difference

    I was wondering if anyone on here has had a nasal potential difference test done. How uncomfortable is it? Can anyone compare it to a vocal chord dysfunction test where they put a camera down...
  5. Replies
    51
    Views
    3,290

    This thread is over ten years old, but I find it...

    This thread is over ten years old, but I find it very interesting. I would like some updated information from people.

    My 19 yo daughter has been sick for a long time, all her life in reality,...
  6. Replies
    4
    Views
    1,387

    Kenna2 - Thank you for all of that. I did look...

    Kenna2 -

    Thank you for all of that. I did look at the med that she was given for the insomnia and it could have the weight loss effect. She was having weight issues before being on it, but that...
  7. Replies
    11
    Views
    2,330

    I have a question that relates to this thread. ...

    I have a question that relates to this thread. Has anyone with CF here been diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome)? My daughter was diagnosed with that last year which led...
  8. Replies
    4
    Views
    1,387

    Adult Sibling Not Wanting to be Tested

    Kenna2 -

    Thank you for your reply!

    As she is an adult, some of these questions are hard to answer, since she is more private than when she was younger, and she has been very distant lately,...
  9. Replies
    4
    Views
    1,387

    Adult Sibling Not Wanting to be Tested

    My nineteen year old was diagnosed with Cystic Fibrosis Related Disease in January, has two mutations in trans on the CFTR gene. My 23 year old daughter has been worried about her weight for years,...
  10. Replies
    5
    Views
    2,105

    She's being seen by a gastroenterologist. We have...

    She's being seen by a gastroenterologist. We have tried going down the reflux route but it didn't help her symptoms. Her fecal elastase was in the 400 range, so she's pancreatic sufficient? He tried...
  11. Replies
    5
    Views
    2,105

    Thank you for responding Kenna2. I have a...

    Thank you for responding Kenna2.

    I have a biochemistry degree, and I'm generally pretty good about researching things, but I just can't find anything on this. Yes. We have been to an accredited...
  12. Replies
    5
    Views
    2,105

    It's been a few weeks since I posted this, and...

    It's been a few weeks since I posted this, and have received no replies.

    I have been unable to find anything in the research on these mutations together, so am thinking that there aren't any...
  13. Replies
    5
    Views
    2,105

    Curious about thoughts on these mutations

    Hello! I'm kind of new here, been reading posts for a while but was not able to post until recently.

    I have a nineteen year old daughter with the following mutations:

    Ambry Full Gene...
Results 1 to 13 of 13