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Cystic Fibrosis
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michele99
New Member
Joined : Apr 2006
Posts : 1
Posted 4/22/2006 6:20 PM (GMT -7)
hi my name is Michele. I have a 4 month old daughter who is having a hard time breathing, etc.. the dr.s are doing a sweat test on tuesday, and I am scared to death. If anyone can tell me what to expect if the test comes back positive, I would appreciate it. Thank you.
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Twinstride
Regular Member
Joined : Sep 2005
Posts : 318
Posted 4/22/2006 7:55 PM (GMT -7)
Hi Michele and welcome to HW!.

Try not to be scared. The sweat test does not hurt.

Lets all pray for good results everyone!.

Keep us posted on how things turn out Michele. Not everyone who has a breathing problem has CF.

Hugs!
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Chaser
Regular Member
Joined : Apr 2006
Posts : 91
Posted 4/23/2006 10:52 AM (GMT -7)
All I can say is make sure that you get a dna test done as well. There is a such thing as a false negative, but not a false positive. There are known cases of people with CF who have come back with negative or normal sweat results who still end up having a mild version of CF only diagnosed through a blood test. Also make sure you are getting these tests done at an accredited CF centre, as they are way more accurate. I know this is a tough time for you, but hopefully you're child won't have CF. And if so, then the sooner he/she gets treatment, the better they will be.

Good luck!
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Twinstride
Regular Member
Joined : Sep 2005
Posts : 318
Posted 4/24/2006 6:14 AM (GMT -7)
Chaser, great info.

Matter of fact, my grandaughter and my "new" grandson were tested via dna and sweat chloride also. My twins are affected with CF but my daughter is a carrier only. Her children were tested soon right after birth. We are still waiting on the results of my newborn grandson's CF blood test.

My daughter has a carrier status of the Delta F508, as my twin boys have CF and their mutation status is the Delta F508.

Hugs!
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kristins mom
Regular Member
Joined : Sep 2005
Posts : 27
Posted 4/24/2006 10:32 AM (GMT -7)
hi Michele-  I know it's a scary time you're going through right now but just take one day at a time.  If the test comes back positive, ask your doctor for a referral to the nearest CF center.  They will probably retest just to confirm, and if they also come back with a positive result, they will help you with all your questions and be able to start your child on a regime immediately.  Try hard not to concentrate on all the negative aspects ( I know how hard that is!) but focus on learning everything you can about CF.  One thing I learned was never stop researching!!!  This includes not only just the medical field but anyone that has walked in your shoes.  This forum is an excellent place to start.  You will learn about CF from the patient/parent experience and alot of helpful ideas and resources for the medical side.  There will be days when you are afraid-angry-confused-discouraged-etc but these are normal feelings.  Find good emotional support, the load isn't quite as heavy and bleak if you have someone you can turn to.  Life will be totally different with a positive result but you have no choice but to go on, and don't forget to see the silver lining inside of even the blackest cloud.  Enjoy each day and don't waste it by dwelling on what may or may not happen tomorrow.  Please feel free to always come here if you feel alone and in need of a friend, that's why most of us found this site in the first place.  I pray that the results of the test will be negative, but if not-remember you aren't alone.  There are many trials going on as we speak and one day soon we may all be rejoicing and heaving a big sigh of relief as CF becomes a curable disease!!!! 

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Chaser
Regular Member
Joined : Apr 2006
Posts : 91
Posted 4/24/2006 1:42 PM (GMT -7)
Here is a link to the CF Foundations. They have a plethora of information on that website.


http://www.cysticfibrosis.com/

http://www.cff.org/home/


Hope this helps!

Edited by Moderator Twinstride.  It is against the forum rules to post other forum sites.  Sorry.

Post Edited By Moderator (Twinstride) : 4/24/2006 4:23:53 PM (GMT-6)

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