Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

I just wanna kinda hear that this is normal, because I would never have thought this is something they would test for, for this reason, and it scares me so much even thinking about it, even though I know the chances are low.

From what I know ( and if anyone knows more and can advice me please do) ...there are multiples strains of cystic fibrosis and although both me and DH were tested and came out negative , there's no way to fully check for ALL the possible mutations which is why they still want her tested.

She is having other blood tests done, so this is just "one" of the tests, but I am so nuerotic when it comes to these kids , I cant take the what if's.

Basically its just because she eats like a horse and is not gaining weight like she should ( and b/c she has had pnemonia).

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

I went through this with my DS a few years back when he was 2. He had pneumonia and always had these asthma like outbreaks plus he was thin so they performed a routine sweat test....came out positive...I lost it.....they performed another one to double check....came out positive again....I didnt eat, sleep, move for days. We had to go for genetic testing and it took 6 weeks to get the results back (worst 6 weeks of my life)
Come to find out NEGATIVE!!! My son wasnt even a carrier of the gene.

The genetic counselors at Stonybrook explained to me and my husband that in order for your child to get CF both parents need to carry the gene, in order for your child to be a carrier only 1 parent needs to carry the gene.

Sorry your going through this its scary and my prayers are with you!

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Thanks for your reply. I can't imagine how scared you were. Me and Dh were both tested before my son was born for it...and it was negative....so I didn't see the need for this...but they then said that the test for the mutation is for most common mutations and there are 1000's....I never heard that before.

Do you remember how long till you got the test results back?

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

My dd had the sweat test done. I had tested positive as a carrier during pg, my DH neg. When my DD was born she tested positive, which we knew there was a good chance she could be a carrier. My dd was always very healthy didn't want to do sweat test but they pretty much made us. We went for one test at Good Sam, came back positive. Scared the hell out of me. Went to Stonybrook to have the test repeated came back negative. Totally different, at good sam they told us to go outside with her bundled to get her to sweat. At Stonybrook they said that never should have been done that. Came back negative at Stonybrook but since we had gotten different results they wanted to do the full blood panel. That had a taken a few weeks to get the results. Turned out she was fine. Also they told us would be covered by insurance and then get a bill from the company that did the blood test that it wasn't covered. They ended up not charging us since hospital had told us it was approved.
It was a very scary time and I remember looking on support websites for parents of children who had CF which was even more scary.

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

GREAT....MY Dr. Is sending us to Good Sam. I dont think there is an option as the Dr is part of Good Sam's center for PEdiatric care, basically all procedures ordered are through good Sam.

UGH....I am questioning having it done now.

I coul dnot handle false results.

I was told that they put you in a hot room for an hour?

UGH, I'm so stressed now. Thanks everyone for stories.

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

MY DD was also tested at age 1 for multiple episodes of pneumonia plus being very small for her age. We tested at Goods Sam and she came back "High Normal" amd needed to be retested. I knew in my heart she did not have CF, so i postponed the retest until she had another pneumonia episode - she never did.


I questioned the need also because my DH and I were tested and are not carriers, but they gave us they alternate strain explanation.

She is fine - still underweight for her age and height and has outgrown the pneumonia problems.

Good Luck!

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Posted by Sharon

MY DD was also tested at age 1 for multiple episodes of pneumonia plus being very small for her age. We tested at Goods Sam and she came back "High Normal" amd needed to be retested. I knew in my heart she did not have CF, so i postponed the retest until she had another pneumonia episode - she never did.


I questioned the need also because my DH and I were tested and are not carriers, but they gave us they alternate strain explanation.

She is fine - still underweight for her age and height and has outgrown the pneumonia problems.

Good Luck!

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Ayla was tested at Good Sam in June. We were told to go outside to get all her hot so she could sweat etc. She tested neg.

If you go now (sept) I am not sure what they will tell you to do. I posted this to tell you my experience with good sam and that I had no complaints.

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Posted by carolyns4cupcakes

Ayla was tested at Good Sam in June. We were told to go outside to get all her hot so she could sweat etc. She tested neg.

If you go now (sept) I am not sure what they will tell you to do. I posted this to tell you my experience with good sam and that I had no complaints.

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Posted by dm24angel

Posted by carolyns4cupcakes

Ayla was tested at Good Sam in June. We were told to go outside to get all her hot so she could sweat etc. She tested neg.

If you go now (sept) I am not sure what they will tell you to do. I posted this to tell you my experience with good sam and that I had no complaints.

Did they make you over dress her? How do you make a baby sweat?

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Posted by dm24angel

GREAT....MY Dr. Is sending us to Good Sam. I dont think there is an option as the Dr is part of Good Sam's center for PEdiatric care, basically all procedures ordered are through good Sam.

UGH....I am questioning having it done now.

I coul dnot handle false results.

I was told that they put you in a hot room for an hour?

UGH, I'm so stressed now. Thanks everyone for stories.

Re: Anyone's DC have to go for a sweat test to rule out CF just because of poor weight gain?

Posted by ChrisDee

Posted by dm24angel

GREAT....MY Dr. Is sending us to Good Sam. I dont think there is an option as the Dr is part of Good Sam's center for PEdiatric care, basically all procedures ordered are through good Sam.

UGH....I am questioning having it done now.

I coul dnot handle false results.

I was told that they put you in a hot room for an hour?

UGH, I'm so stressed now. Thanks everyone for stories.

We were sent to Good Sam from Dr Gold at the center for pediatric specialties in West Islip(I think), when I expressed my concerns about wanting to be retested at Stonybrook, he was fine with it. You will get a script and you are free to go where you want.