It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Cystic Fibrosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-18-2005, 11:05 AM   #1
Newbie
(female)
 
Join Date: Jul 2005
Posts: 2
bitburgbabe HB User
Question confused

My daughter is 7 years old. We have done the sweat test and the first one was 47 and the 2nd one was 58. The military did the prenatal DNA test and it was negative. We do not know what to do. We are on an emotional whirl wind. My daughter has a chronic cough. She has been diagnosed with gerd. She also had a cat scan which stated that she has chronic snits. She has nodules on her vocal cords. In addition when she gets sick she gets real sick. We do not know what to do. Some DR's tell us that she does not have CF and others say we do. My husbandís father says that it is in his family. My parents say that they do not know of any cases. Any advice anyone can give us would be greatly appreciated. Thank you!

Last edited by bitburgbabe; 07-18-2005 at 11:09 AM.

 
Sponsors Lightbulb
   
Old 07-18-2005, 01:09 PM   #2
Member
(female)
 
Join Date: Feb 2004
Posts: 92
sherry092 HB User
Re: confused

Hi,

I'm a mother of a 3 year old with CF-- and I know how difficult this all is. First, could you explain the prenatal DNA test to me-- did they test you & your husband to see if you're both carriers??? If so, unfortunately that blood test does not test for all mutations of the CF gene.

The only way invitro that the baby could be checked is through CVS, or an amnio. Did you have one of those??

It does concern me that its in your husband's family-- neither my husband, nor my family had any history of CF, but both of us are carriers.

Her numbers are considered borderline, but I strongly recommend you go the CF website, find an ACCREDITED CF center near you and take your daughter in. They can do a AMBRY genetic blood test on her, or all 3 of you to find out if she has 2 copies of a CF gene and if you both are carriers.

Please, please do not wait any longer-- if it is positive, she needs to get on the proper meds & treatments. I know its scary, but you need to get to the bottom of this right away, this "some docs say we have it, some say we don't" is a bunch of garbage-- she either has CF- then confirm it with a blood test- or she doesn't-- there is NOTHING in between.

I can answer any questions, but please find a CF center ASAP. Type in Cystic Fibrosis Foundation on your search engine--- it will come up cff

Last edited by sherry092; 07-18-2005 at 01:11 PM.

 
Sponsors Lightbulb
   
Old 07-18-2005, 01:23 PM   #3
Senior Member
(female)
 
Join Date: Feb 2005
Posts: 246
dannysmom HB User
Re: confused

We are military also. I would not trust them to do such an important test. We have one child with CF and attempted to get our other two tested. Once they sent it to the wrong lab, and another time they put it in the wrong tube. I agree with sherry092, go to a CF accredited center and get the genetic test done.

 
Old 07-18-2005, 02:52 PM   #4
Senior Veteran
(female)
 
Join Date: Nov 2003
Location: Midwest
Posts: 2,006
Ratatosk HB UserRatatosk HB User
Re: confused

I know it's a scary situation, but your child needs to be tested at an accredited CF facility. DS had a sweat test that came back normal. Neither DH or I had a family history -- and believe me we wracked our brains and our parents contacted family member after family member to see if they knew of anyone in our families who had CF. Nobody did. DS had genetic blood tests which showed postive for CF.

 
Old 07-19-2005, 02:35 AM   #5
Newbie
(female)
 
Join Date: Jul 2005
Posts: 2
bitburgbabe HB User
Re: confused

The doctors said that the prenatal genetic test looks at 25 different mutations that was recommended by the American Pediatric's. The problem is that we are currently living in Belgium. The military hospital here does not offer anything here. As a result they have send off in the belgium community. I do not know if they are an accredited CF facility. However, they are doing more genetic testing and also going to do a pulmonary function test. We do not go back to the doctor until August 22. Should I worry since the sweat test was in the possible range and the first genetic test was negative? Can she still have CF and not be detected in the basic CF genetic test? Deep down my gut says she has it since she has most of the symptoms. However I have trouble trusting the doctors since they have been screwing up a lot. Please help.

 
Old 07-19-2005, 05:11 AM   #6
Newbie
(female)
 
Join Date: Jul 2005
Posts: 6
shgado HB User
Re: confused

Another clue if thechild is not on Pancrease are the stools. They are bulky and usually have a strong smell. A lot of time you can see fat in them. My daughter was diaganosed when she was 4 months and we had not history of it in our family. We were baffled because my husband and I are black, both with one white parent. I'd do with the sweat test and the stools

shgado

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Confused and losing it am I bipolar? chat2010 Bipolar Disorder 6 05-03-2010 11:21 PM
i am so confused!!Any ideas??? marmar2007 Cancer: Breast 5 12-26-2007 10:55 PM
missing grandad so much, and so confused chelle1980 Death & Dying 2 05-03-2007 04:02 PM
TTC and so frustrated and confused. HELP ishade Trying to Conceive (TTC) 0 09-20-2006 09:57 AM
I"M SO CONFUSED!!!!!!!!!!!!!!!! mtm9138 Lymphomas 4 08-04-2005 03:05 PM




« hi | stool test »
Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 10:05 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!