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

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beankin1
New Member


Date Joined Jun 2013
Total Posts : 4
   Posted 10/5/2013 10:51 AM (GMT -6)   
Long winded please bear with me. I am not sure if I have posted here before or not.
 
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)


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/24/2013 9:14 AM (GMT -6)   
beankin,
 
First of all I congratulate you on the adoption of this wonderful little girl who so obviously need a Mother that would advocate for her. I cannot imagine the fears and anxiety her health issues are causing both of you and I am keeping you in my prayers if that is OK?
 
The hallmark signs and symptoms of cystic fibrosis are salty tasting skin poor growth and poor weight gain despite a normal food intake, accumulation of thick, sticky mucus, frequent chest infections, and coughing or shortness of breath. It appears your daughter needs more testing and fighting insurance companies is a tough one, but you just keep at it and you have my support. 
 
The lungs of individuals with cystic fibrosis are colonized and infected by bacteria from an early age. These bacteria, which often spread among individuals with CF, thrive in the altered mucus, which collects in the small airways of the lungs. This mucus leads to the formation of bacterial microenvironments known as biofilms that are difficult for immune cells and antibiotics to penetrate. Viscous secretions and persistent respiratory infections repeatedly damage the lung by gradually remodeling the airways, which makes infection even more difficult to eradicate.
 
Not sure what kind of access you have but from what I have read, Cincinnati Hospital  is now among the small handful of elite CF centers for children.  If their is anyway you could talk to someone there about your daughter it may be helpful.
 
I wish I had more answers for you as I can't think of another chronic illness that asks so much of families and is so difficult for the children.  I have a friend who has moved from our area, however, she and her husband have 2 children with CF and one child that is perfectly fine. She and her husband are both nurses and work 12 hour shifts opposite of each other to care for their children.
 
I wish you peace and hope other members will have some answers for you.
 
Kindly,
Kitt
 
 
~~Kitt~~
Moderator: Anxiety, Osteoarthritis,
GERD/Heartburn and Heart/Cardiovascular Disease.



"She Stood in the Storm & When the Wind Did Not Blow Her Away, She Adjusted Her Sails."
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