Cystic Fibrosis - Sweat Test?

For those of you who had to take your DC's for a sweat test, do you recall what your DC's numbers were (both Na and Cl)?

Also, for those whose newborn state screening came back with an abnormality regarding Cystic Fibrosis, do you remember what it was or they were if there was more than one?



In case some of you are wondering why I'm asking these questions, DS's bloodwork came back with an elevated IRT and he definitely has 1 CF mutation (the delF508, which is the most common). The state screening states there's a 4% chance that he has CF. We recently took him for the sweat test and his results came back with a "high negative value" so we have to retest again. I've been told not to read into anything by a number of doctors, but it's hard not to...that's just my nature.

Re: Cystic Fibrosis - Sweat Test?

I dont have any answers for you.

But on Yahoo go to Groups and punch in Cystic Fibrosis. Im sure there are a lot of Mommies on there that could help answer your questions...

I belong to Yahoo Groups for Mosaic Down Syndrome and Autism.

Re: Cystic Fibrosis - Sweat Test?

We went through this with Gracie when she was 8 weeks old. It was SCARY. I do not remember the numbers b/c the four weeks between the call from the ped at the hospital and the test were a blur. Her numbers were fine and she is carrier, but does not have CF. I have a file of Gracie's stuff, it might be in there. I will have to look it up once she is in bed, K? Give me until after 9PM and I will post it then. Hang in there.

Re: Cystic Fibrosis - Sweat Test?

My nephew had to go through two sweat tests and the second time around he got burned by it. The only thing I wanted to add was that in order for it to be passed on to your child both you and dh have to be carriers.

Re: Cystic Fibrosis - Sweat Test?

No advice other than to check out the related links below.

&&&&&&&for your DS.

Re: Cystic Fibrosis - Sweat Test?

I am glad you posted this. I have to take DS for the sweat test on the 14th of may. I am a carrier. I found out when I was pregnant. DH is not a carrier. DS has had multiple respiratory infections and has been wheezing since he was 3 months old. He is now 6 months. Newborn screening showed negative for Cystic Fibrosis but the pediatric pulm. stated there are many mutations and just check it out and see.
Was the test horrible? Did it hurt?
How did that DC get burned? Now I am even more nervous.

to your DC I hope everything works out.

Re: Cystic Fibrosis - Sweat Test?

sunflower, the test wasn't bad at all. The hard part is extending and holding the arm out for the 5 minutes while they have the electrodes on. Obviously a 1 month old will scream their head off, but being that your DS is a little older, he may be more cooperative. Oh, if your son is on the hairy side, removing the tape at the end of the test may cause some discomfort (they wrap tape around the arm and place gauze beneath it to collect the sweat.) Other than that, we experienced no side effects.

Hang in there! It's good that your Ped Pulm is ruling the CF out despite the neg. tests. As he stated, the screenings only cover so many mutations. I'm crossing my fingers and saying prayers for your DS. Hope he gets better soon!!!!

Re: Cystic Fibrosis - Sweat Test?

thanks for the girls! I'll keep you posted after the 2nd sweat test.

Re: Cystic Fibrosis - Sweat Test?

Hang in there! It's good that your Ped Pulm is ruling the CF out despite the neg. tests. As he stated, the screenings only cover so many mutations. I'm crossing my fingers and saying prayers for your DS. Hope he gets better soon!!!!



Thank you so much. You made me feel better. I had posted before about this but nobody knew anything about this test. I hope all goes well with your second sweat test. Where are you having it done? We are going to Good Sam.

Re: Cystic Fibrosis - Sweat Test?

Posted by sunflowerdmsrn

Thank you so much. You made me feel better. I had posted before about this but nobody knew anything about this test. I hope all goes well with your second sweat test. Where are you having it done? We are going to Good Sam.

Re: Cystic Fibrosis - Sweat Test?

keep us posted Jen!

Re: Cystic Fibrosis - Sweat Test?

I am so sorry your DC has to go for another sweat test. My Ds had it when he was 8 weeks. He got burned
but it was negative. Really the hardest thing is hearing them cry from it, they dont understand. I do not know the numbers, but I want to find out, just because I work where there is a lot of research done, and was asking a CF coordinator how often a false negative happens. She said its incredibly uncommon, but wanted to know his numbers, so now I want to find out.

GOOD LUCK toy you, I hope it all works out okay, sorry for your DC going through the test again. I also used schneiders...

Re: Cystic Fibrosis - Sweat Test?

Posted by sunflowerdmsrn

I am glad you posted this. I have to take DS for the sweat test on the 14th of may. I am a carrier. I found out when I was pregnant. DH is not a carrier. DS has had multiple respiratory infections and has been wheezing since he was 3 months old. He is now 6 months. Newborn screening showed negative for Cystic Fibrosis but the pediatric pulm. stated there are many mutations and just check it out and see.
Was the test horrible? Did it hurt?
How did that DC get burned? Now I am even more nervous.

to your DC I hope everything works out.