quick - if i had an amnio, would that have tested for cystic fibrosis?

[lmh2402]

if you know, please let me know

thx

[StantonHyde]

Somehow I think so, but it has been 7.5 years, so my memory is foggy.

[lmh2402]

thank you. i'm hoping someone will chime in with an absolute certainty.

i think i'm reading on google that it does screen for CF

so i'm just making sure...if i had an amnio and was told "all was good."
that means 100% sure that no CF, right?

thx

[KLD313]

I believe it does but I'm also pretty sure the newborn screening and prenantal testing checks for that, too.

[AnnieW625]

With DD1 I had a separate blood test and no amino. With baby 2 I had an amnio and I don't recall if it tested for cystic fibrosis or not.

If they did test you during the amnio and it came back negative that is good news, but I would probably still have your DH tested as he could still be a carrier, but I think both parents have to be a carrier still.
http://www.cff.org/mobile/AboutCF/Testing/

I just wanted to say that the few kids I know with CF are very skinny and have been that way since birth. I remember seeing a photo of your DD when you posted your Christmas card and I think she was very healthy looking and not underweight at all for a the 4 or 5 month old.

[Green_Tea]

The blood tests on YOU and, possibly, your partner, would screen for the CF gene. In order for it to be genetically inherited, you both need to carry the gene. It's a standard part of your first trimester bloodwork. If you came back positive for the gene, they'd test the father of the baby to determine risk.

That said, CF can occur due to a spontaneous mutation, and the bloodwork they do on you tests for the most common mutation. It's very rare for there to be a spontaneous occurance of CF.

I know all this because they suspected CF in my oldest DD, despite the fact that neither DH nor I are carriers. DD had a sweat test (very easy, non-invasive) and she tested negative.

[TxCat]

I don't think it's mandatorily done at all centers in the U.S. - many do, but I'd hesitate to say all, routinely. If you had given your MFM or genetic counselor any cause for concern re: cystic fibrosis, ie, family history, than it was most likely screened for. Only way you can know 100% is to call your physician or genetic counselor and find out.

[AngB]

It also may depend on when and what the amnio was for. I had one at 36 weeks for lung maturity for DS1 before delivering. We got the results back in less than an hour but I'm pretty sure lung maturity was all they were testing.

[Snow mom]

My SIL had an amnio and I know they tested for CF. It's also part of one of the bigger (optional) newborn screens. The state mandated screens vary by state so you might check that for your state as well.

[lfp2n]

I had an amino. Cf testing was optional, I declined as they only test for a handful of cf causing mutations.

[scrooks]

I had seperate blood work to test for the cf gene... But I've also never had an amnio. I hope you get the answer you are looking for!

[iaam]

The blood tests on YOU and, possibly, your partner, would screen for the CF gene. In order for it to be genetically inherited, you both need to carry the gene. It's a standard part of your first trimester bloodwork. If you came back positive for the gene, they'd test the father of the baby to determine risk.

That said, CF can occur due to a spontaneous mutation, and the bloodwork they do on you tests for the most common mutation. It's very rare for there to be a spontaneous occurance of CF.

I know all this because they suspected CF in my oldest DD, despite the fact that neither DH nor I are carriers. DD had a sweat test (very easy, non-invasive) and she tested negative.

This is spot on. So, if your first trimester boold tests did not reveal you as a carrier, the chance of your having a CF baby is very small (would happen if a spontaneous mutation occurs).

[Kindra178]

After 2001, it was recommended that every newly pregnant woman get tested (simple blood test on your first pregnancy visit) for the CF gene. If you test positive, then and only then would your partner be tested. If you test negative, no further testing is done. The blood test screens for 80% of the most common kinds of CF. Even if you had an amnio, this blood test was most likely done.

Because you delivered in NY or Northern NJ, I would suspect strongly that you got this blood test. You may not remember because I think they also check for a bunch of random other things at this point as well. It's also common in people of European heritage, Irish and Italian as well as Northern Europeans.

To the extent you are worried about one of your kids having CF, I would recommend a sweat test. We are probably going to do one at some point. It's not a hard test on a child. Our ped and allergist, both of whom have practiced for around 14 years, have never seen a case of CF unknowingly. Put another way, they have seen kids with CF whose parents knew their kid was likely to have CF. But in the combined 28 years of practice, most of which has been after the blood test use, they have not seen a positive sweat test result.

Let me know if you have any other questions. I learned too much about CF in the past couple of years.

[sunshine873]

I have a friend who tested positive for the CF gene and her husband tested negative. Needless to say, their third child was just diagnosed with CF. those tests only look for the most positive few genes, but there are over 1500 mutations out there and unless you know and have a reason to test for all of them, anything that's not one of the most common will be missed.

[PZMommy]

Even though my bloodwork was negative and my son's newborn screening was negative, when he had a variety of issues that are common in CF, they went ahead and did the sweat test. It is a simple and painless test, although it takes about an hour or so to complete. We got the results the same day. It gave us the peace of mind, and we were able to cross that off our list of reasons my son has so many lung issues.

Most of the bloodwork only tests for the 32 most common mutations of CF, but there are over 150 mutations.

[ahisma]

We went through three rounds of CF testing with DS. Three. He doesn't have CF, or any mutation...so my experience ends there.

The quickest way to test was to see if I was a carrier. It was a quick blood test with fast results. I called my OB's office, explained that they thought DS may have CF and asked to be tested. I'm not a carrier, but the ped still ordered a ton of tests, and repeat tests for DS.

It's worth noting that docs repeatedly mentioned the lick test as being a pretty solid indicator. It's just what it sounds like, you lick their skin. CF kids tend to be salty.

[lmh2402]

thanks, everyone

emailed my OB last night and she called super early this morning, but i missed the call

calling her back at 11am my time.

in the meantime, i licked DD on her arm and belly. def no salty taste

sweat test sched for next tues morning.

i go back and forth between thinking there is absolutely ZERO chance of this and no reason to worry at all...and then total, absolute panic

she had two more massive BMs (sorry, tmi) that were just terribly foul and gross

and she continues to hack up a lung while nursing

and her growth is good, but her length is much, much bigger percentage-wise than her weight

anyway, thanks for the info and personal stories!

[janine]

I did have an amnio with DD2 and as I recall they did test for CF. Did you have one?

I know it is grueling but it seems unlikely you have anything to worry about, I hope they get back to you soon. I know waiting for the amnio results was incredibly difficult, I can't imagine how it is once the child is here.