i want answers

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dad081669
New Member


Date Joined Sep 2006
Total Posts : 6
   Posted 9/30/2006 10:42 AM (GMT -7)   
does two positive sweat test always mean that a person has cystic fibrous.my 4year old just had two sweat test done and both were positive.we are now waiting on the blood work to come back from the dna panel.the only thing that i know is that his sweat test number was 52 both times. we went to two differnt hospitals and had the sweat test done. thank you for anything that you could share with me very scared. the dna test will take two months. thanks again dad.

momof3boys1girl
Regular Member


Date Joined Apr 2006
Total Posts : 25
   Posted 9/30/2006 12:35 PM (GMT -7)   
Why is the dna test taking so long? We had our sons back in just a couple of weeks.
If you dont mind me asking why was your child tested for cf in the first place? Is he having symptoms? I know the thought of your child having cf is horrifying....trust me I have been there.

dad081669
New Member


Date Joined Sep 2006
Total Posts : 6
   Posted 9/30/2006 2:43 PM (GMT -7)   
he is sick all the time with respiratory infections. we were told that he had asthma. he always takes allergy shots 4a week.the last year he seems to have had more then before so his doc. said that he wanted to test him.what does borderline mean. they just told us that the genetic test would take that long i don'T KNOW WHY.he does not eat well and always says that his stomach hurts.

momof3boys1girl
Regular Member


Date Joined Apr 2006
Total Posts : 25
   Posted 9/30/2006 3:37 PM (GMT -7)   
I am not sure exactly what borderline means. I do know they call it the gray area..I would assume that means that they cannot say for sure if it is positive or negative. Was the test done at an accredited cf center? And do you know for sure if they are doing the genetic test that covers even rare mutations (I think it is called the Ambry)? It does sound as if he is having symptoms of cf so it is great that they are doing the genetic testing....I think that is the only way to be really sure about a cf diagnosis. My son never had the sweat test done he only had genetic testing done when he was born (due to meconium ileus). That was how we found out that he had cf. One of my other children did have the sweat test though and his number was 28. You said that your sons stomach hurts all the time....does he have to poop alot and does it look greasy, oily or floats? These are all also signs of malabsorption which is common in cf. I know the thought of cf is scary but if you find out it is cf he will feel much better when put on the proper medications. I am just so sorry you have to wait two months....that is really hard. If you have any more questions I am sure me or someone else on here will have an answer for you. I was so full of questions when my son was first diagnosed. I had no idea what cystic fibrosis was and it was so overwhelming (and still is some days). I have learned alot just from others on this and message boards like it.

dad081669
New Member


Date Joined Sep 2006
Total Posts : 6
   Posted 10/12/2006 6:03 PM (GMT -7)   
hey i am still looking for answers. we found out today that the genetic test that was done was not the one that covers the rare mutations. it only covers 97 of the most common. the good news is he does not have one of them. the bad news is we don't know if he has one of the rare. we meet with the doc next week to set up the other test. we are still in the borderline group and i still don't understand what that means. i thought you eather have it are you don't. our number was 52 that is 8 points under what they say is a sure positive.does the number go up down are stay the same.thank you for your help.

momof3boys1girl
Regular Member


Date Joined Apr 2006
Total Posts : 25
   Posted 10/17/2006 7:22 PM (GMT -7)   
I am not sure exactly why some sweat test come back with borderline numbers. It is true either you have cf or you don't.....cf can sometimes by so difficult to diagnose. There are thousands of different mutations. I have seen other message boards where the child has had a positive sweat test but the ambry genetic test still did not find what mutations they have. There are also others who's child has had a negative sweat test only to have the genetic test come back with two rare mutations. These may be unusual situations but they do happen. 
I hope you will be able to get some anwers soon....waiting is so hard. Please keep us updated when you find out more. Hoping for negative results!!!!
 
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