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Repeat heel prick test for cystic fibrosis...

(20 Posts)
MadMonkeys Thu 11-Oct-12 13:03:16

My mw has just done a repeat heel prick test on my 3 week old DD asthe results from the first test were inconclusve for cystic fibrosis. She seems to be thriving, putting on weight quickly and generally content. Has anyone else had this experience?

I know the chances of her having CF are small, but it is still very worrying. If she does have CF would there have been any symptoms by now?

gaby274 Thu 11-Oct-12 13:11:46

Im a peadriactric nurse and cf symptoms are very hard to spot and by the sounds of your baby putting weight on and thriving it may be harder to spot. Heavy breathing is one but keep check up with doctors. My daughter had measels but no spots doctor picked it up straight away.

Northernlurkerisbehindyouboo Thu 11-Oct-12 13:15:51

No experience but I know what it's like to be very worried about a young baby. All I can suggest Op is that you look at your dd as she is - she's thriving and content and gaining weight. All those are good things. Even if she does have something else to deal with all the good things will still be there and stand her in good stead. I hope you hear back soon - did the midwife say when the results are back?

MadMonkeys Thu 11-Oct-12 13:24:39

Thanks for fast replies. The letter from the screening lab says the results will be back in 14 days, but the mw said I should phone them tomorrow as they will do the tests much quicker than that, maybe even as soon as tomorrow.

Northernlurkerisbehindyouboo Fri 12-Oct-12 17:48:37

Any news?

raindroprhyme Fri 12-Oct-12 22:09:43

My son was diagnosed with CF through the heel prick 7 years ago. His was conclusive though.

If your daughter is thriving and happy just enjoy and try not to worry. It may mean she is a carrier only, so has thrown up some CF markers but not enough to be definite.

they will let you know quickly if it is positive so no news is good news.

let us know how you get on.

raindroprhyme Fri 12-Oct-12 22:12:05

theire will be no symptoms yet. especailly if she is gaining weight well.

MummysHappyPills Fri 12-Oct-12 22:15:38

Try not to worry too much op. the screening test is deliberately sensitive, to maximise the chance they will pick up all genuine cases, which means there canbe false positives sometimes. There are rarer mutations that can cause CF but a milder ilness too. Is there cf in your family at all? I hope you don't have too wait to long, and you receive good news.

MadMonkeys Sun 14-Oct-12 11:28:08

No news yet. I phoned the hospital on Friday and they said the results wll be available Monday lunchtime at the earliest. The nurse I spoke to was lovely, explained that it is very unlikely that DD has CF as they do loads of retests and only a small fraction come back positive. All the same, it feels like a massive cloud overshadowing us and I can'i help looking at my beautiful girl and wondering what is in store for her.

There is no CF in the family.

raindroprhyme how is your son?

Northernlurkerisbehindyouboo Sun 14-Oct-12 17:37:58

Hope you hear tomorrow and get good news. It's encouraging to know they retest a lot isn't it?

VivaLeBeaver Sun 14-Oct-12 17:58:25

Quite often if the blood spots weren't put on the card 100% correctly the results are inconclusive. Not enough blood filling the circle, more than one dot of blood per circle. They're quite fiddly to do.

OneTwoOrThree Sun 14-Oct-12 21:00:42

Both my DCs had their heel prick tests repeated, and both with good outcomes. Stay positive.

raindroprhyme Tue 16-Oct-12 18:42:11

Hi mad monkeys

My son keeps really well, because he started treatment before he was ever ill and so has no lung damage and has always grown well. he is a big lad;)

We also had no Cf in the in the family but my brother and several of my cousins have turned out to be carriers.

Hope you got an answer today you have been on my mind over the weekend.

MadMonkeys Tue 16-Oct-12 19:10:57

Thanks raindroprhyme. Still no news unfortunately. I rang the lab yesterday but all the relevant staff were out of the lab on training. The chap who answered the phone didn't really seem to know anything about it but he said it could be a few days yet before we hear anything.

Northernlurkerisbehindyouboo Tue 16-Oct-12 19:12:42

I was just coming on the thread to ask if you'd heard. How annoying. I would ring again tomorrow if I were you. Can't hurt to ask anyway.

raindroprhyme Tue 16-Oct-12 19:37:10

Oh no. I remeber the feeling well. I spent 1 and a half weeks waiting for DS3 results from a cord blood sample it was horrible. (DS2 CF)

i would try again tomorrow and at least you might get somone who can give you a definite answer of wher it is in the queue and how long it will take them.

don't google.

hugs. xx

MadMonkeys Wed 17-Oct-12 15:27:03

I rang again this morning and they were 'just about to call me' - and the results are good - she is fine, no cf. What as relief. I do hope your son keeps well raindroprhyme. Thanks for your messafes everyone, I really appreciate it.

brass Wed 17-Oct-12 15:45:57

that's really great news, you can enjoy your baby in peace without scary test results hanging over you!

raindroprhyme Wed 17-Oct-12 16:20:23

great news so pleased for you.

............................................and relax. xx

Northernlurkerisbehindyouboo Thu 18-Oct-12 14:01:23

Great news! smile

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