DS is 5 weeks old. I received a call from the genetics counsellor at PMH today advising that DS needs to have further testing for CF as the Guthrie test came back positive. We have to go to the hospital tomorrow for a sweat test. We will have the results by the end of the day.
I am so overwhelmed right now. Stupid me - I googled CF and now I am totally freaked out.
Has anyone had their LO go through this? What was the sweat test like? Were the results positive? How did you cope?
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19-11-2012 23:05 #1
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Cystic fibrosis
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20-11-2012 06:46 #2
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Re: Cystic fibrosis
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20-11-2012 07:04 #3
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Cystic fibrosis
Hi, we had to have the sweat test, but our results were negative. The test itself is certainly nothing to worry about. It doesn't hurt. They put two electrodes on the leg to stimulate the sweat glands then strap a disc to the leg to collect the sweat. They leave the disc on for an hour. My little guy just ran around and played while we were waiting.
Google can be a horrible tool. I know a few people with cf leading very close to normal lives. It's hard to be very normal when you have meds and physio.
Good luck. If it is positive there are loads of support networks to help you through.
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20-11-2012 07:25 #4
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Sorry, I have no experience with this kind of thing but I just wanted to wish you luck for the test
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