Adopted 7 year old daughter - CF??? or Something Else

 

A quick over view. I adopted my 7 year old daughter 6 months ago in China. She came home with pneumonia and is still battling it. She has been on multiple rounds of antibiotics in hospital and at home. She has had 3 separate sweat test about one week apart. All were done at the same accredited CF center. She had 3 extreamly varying results. 72 59 and 20 something.

 

So basically one positive one borderline and one negative. Her stool sample came out fine. She had blood draw for the Ambrey amplified testing. However due to insurance and another coverage I have for her no one can get it together and okay the test to be ran.

 

I have spent countless lunch and break times at work trying to get approval for this test. I am so frustrated I want to pull my hair out and scream! She continues to get x-rays that say there is some sort of plug behind her heart in her lung and pneumonia and yesterday (yes she is in hospital yet again) she got a CT scan of lungs.

 

Edit:  I gave your thread a title and also broke your post in to paragraphs for easier reading.

Kindly,

Kitt

 

At this point she has been vomiting up her G-tube feeding for weeks now. Started off random then progressed to every feed. She is congested, coughing and wheezing like crazy. She did test positive for strep throat at one point over 7-8 weeks ago which I thought odd as she had no other symptoms that I noted.Also her G-tube site continued to get infected when it was tested it also tested positive for strep. Once antibiotics cleared this up I have not had a problem with it .She is so small for her age. Granted she does also have cerebral Palsy and developmental delays. But at 7.9 years of age she is weighing in at 24 1/2 pounds uggg!

 

So here are my direct questions.
1. Can you have a stool sample test say no problems with pancreatic function and later develop this issue?
2. I read somewhere and can not locate it again that you should not be on antibiotics during this test? Is this true? Why? She was on antibiotics when the test was preformed.
3. Any ideas on what this plug could be?
4. Any other reasons someone would get such a wide variety of sweat test results?
5. Is there any other conditions out there that would cause salty tasting skin? This is how this whole ordeal started in the first place. And boy is she salty!
Thanks and sorry for the rant. Off to the hospital to see my little girl.

Post Edited By Moderator (stkitt) : 11/24/2013 7:53:34 AM (GMT-7)