Does this sound like anyone else

C

ccmom

New member
Our 6 year old daughter has had the following: pancreatic insuffency for 18 mo on enzymes then it "corrected" itself, constant upper respiratory and sinus infections, can not digest milk, protein, or carbs., failure to thrive and has been on a feeding tube for 3 years, severe reflux, sudamous, strep phnemo, and other unid. neg rod bacteria. She is dev. delayed due to lack of oxygen at some point but the neuro keeps telling me that the brain injury does not explain the lack of dev. The pulmo has tested for cf and it has come back neg. She has not been tested for 4 years. He has her on the treatment course for cf: pulmozyme, tobi nebs for infection when needed, also sinuneb tobi for sinus infections. She is on large doses GSH and has the airway clearance vest. Any others like this?
 
A

anonymous

New member
It might be a good idea to run the Ambry test to see if she is positive for cf. There are instances where a person does have cf but the sweat test is negative sometimes due to the technicians error. Or some cf genes are associated with negative sweat test results. It might help answer the obvious question you have which is whether or not you daughter actually has cf since the doctors seem to be treating her for it. If the Ambry test is negative for cf genes, then you might need to find some answers elsewhere. Hope you find some answers soon. It is good that you have a doctor who is treating the "symptoms," despite no diagnosis.
Sharon, mom to Sophia, 3 and Jack, 16 months both with cf
 
A

anonymous

New member
Also, check into primary ciliary dyskinesia. More rare but it has a lot of similiarities, respiratory wise, to Cf.
 
A

anonymous

New member
Hello my name is Tina and I can feel your pain. I went through 3 years of not knowing until I found my son's current doctor's.(Dr. Rogers & Dr. Riff) They recently sent us to UNC Hospital where we met Dr. Barker. He did a Nasal Passage Differencial test and was able to give us immediate results. I was very pleased and happy to finally know that YES Michael does have CF and that the meds that he had been on were the right ones.

I wish you luck!!!
 
A

allie1

New member
Hi Tina,

I also take my 3 yr old daughter to UNC.....we see Dr Leigh and we have been very happy with the care she receives there. Where do you live?

Amy
 
A

anonymous

New member
If I were you I would look for a pulmonary (CF) specialist in your area and go for a second opinion. Her symptoms sound pretty fishy. My son was 5 when he was diagnosed but not without going through his little life being told multiple diagnoses and not to worry.
 
You must log in or register to reply here.
Top