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DIVER
New Member


Date Joined Oct 2006
Total Posts : 2
   Posted 10/8/2006 3:51 PM (GMT -7)   
 
Hello every one,
 
we just have a baby boy 2 weeks ago and state of Virgina blood screeing test result came as abnormal for CF. I have been reading all about CF last few days and I need to know
 
abnormal CF level, does that mean he has CF? could be inactive? ,  what are the steps we should take? we have a sweat test 2 weeks later, as I understood if the sweat test is positive we need to have a genetic DNA test to undersand what kind of he has.
 
what kind of lab we should go ?
 
he just born may be it is early but everything seems normal with him. anything to wacth early days?
 
seems like doctors does not know too much about CF. What kind of questions we should ask to our doctor?where is the best lab and hospital to cope with CF.
 
thanks and good luck to deal with this terrible disease, people needs to be warn before even getting married about CF. we could not even enjoy our first born baby may be the last one sad
 
thanks again
 
 
 
 
 
 

Chaser
Regular Member


Date Joined Apr 2006
Total Posts : 91
   Posted 10/8/2006 4:32 PM (GMT -7)   
abnormal CF level, does that mean he has CF? could be inactive? , what are the steps we should take?

AT THIS POINT I'M NOT TOO SURE WHAT ABNORMAL MEANS, BUT ALL I CAN SAY IS GO AND GET A SWEAT TEST DONE AT AN ACCREDITED CF CENTRE. THEY HAVE THE BEST RESULTS WITH SWEAT TESTS, AS THERE IS A SUCH THING AS A FALSE NEGATIVE, BUT NOT A FALSE POSITIVE. FOLLOW THIS UP WITH A DNA TEST. IN ORDER FOR YOUR BABY TO HAVE CF HE/SHE MUST HAVE 2 COPIES OF THE DEFECTIVE GENE, I.E. ONE FROM YOU, ONE FROM YOUR HUSBAND.

we have a sweat test 2 weeks later, as I understood if the sweat test is positive we need to have a genetic DNA test to undersand what kind of he has.

what kind of lab we should go ?

LIKE I SAID, I WOULD GET THIS DONE AT AN ACCREDITED CF CENTRE.

he just born may be it is early but everything seems normal with him. anything to wacth early days?

KISS HIS FOREHEAD. I KNOW IT SOUNDS SILLY, BUT ONE OF THE MAIN SYMPTOMS OF CF IS VERY SALTY SKIN. DOES HE HAVE ANY WEIGHT GAIN ISSUES? RESPIRATORY PROBLEMS? EVEN IF HE DOESN'T EXHIBIT ANY SYMPTOMS RIGHT NOW, DOESN'T MEAN HE DOESN'T HAVE CF. MANY PEOPLE ARE DIAGNOSED IN THEIR TWENTIES, THIRTIES AND EVEN FORTIES WITH VERY MILD SYMPTOMS.

thanks and good luck to deal with this terrible disease, people needs to be warn before even getting married about CF. we could not even enjoy our first born baby may be the last one sad

JUST BECAUSE YOUR BABY MAY OR MAY NOT HAVE CF, DOESN'T MEAN THAT HE WON'T BE ABLE TO LIVE A LONG AND FOR THE MOST PART NORMAL LIFE. I'M 25 YEARS OLD, AND HAVE BARELY HAD ANY PROBLEMS WITH MY CF. NEW MEDS ARE COMING OUT ALL THE TIME. THEY'VE COME A VERY LONG WAY TO HELPING PEOPLE WITH CF. I WAS ONLY LITTLE WHEN THEY FIRST DISCOVERED THE CF GENE. JUST BECAUSE YOUR SON MAY HAVE CF DOESN'T MEAN YOU WON'T BE ABLE TO HAVE MORE KIDS. HAVE YOU AND YOUR HUSBAND BEEN SCREENED TO SEE IF YOU ARE CARRIERS OF THE GENE? THAT IS SOMETHING YOU SHOULD LOOK INTO. ENJOY YOUR SON. IF HE DOES HAVE CF, IT WILL EVENTUALLY BECOME NORMAL FOR YOU. GOOD LUCK.

DIVER
New Member


Date Joined Oct 2006
Total Posts : 2
   Posted 10/10/2006 7:20 PM (GMT -7)   

 

Thanks for the all the info, as you can imagine like most parents we are in shock and feeling responsible for his situation, There are many disease on earth worst than CF, the more I read about CF more I am realizing may be my brother is a CF patient but nobody ever realized. He is doing fine (his mutation may be mild) he is 27.

I have no doubt the complete cure will be find in the near future , we are not sure if my son has CF or not but we will fight to the end and support all the activities related CF cure. I do not think most people are aware of CF.

Thanks again, and I hope God helps us all for the cure.

Regards,

Atil

 

 

 

 

 

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