Heel prick test - Definitely tests for CF?

[angel1976]

Hi all,

I have an extremely gorgeous DS2 who is now 4.5 months old. He's been a fantastic sleeper from the start other than his occasional bouts of 'cough'. Last night, he has had another 'episode' where he woke up at about 10.45pm (after going to bed at 6.45pm) and just could not stop coughing. When I picked him up, he seemed to be really struggling to cough something up. I gave him some milk (thinking it will ease the cough but I knew from experience what he would do next...) and finally he threw up a whole lot of phlegm (plus some milk) and went back to sleep. Same thing happened again at 4.30am. Of course my mind starts wandering and I think 'does he have CF?' I did some googling (I know, I know...) and it seems that the heel prick test does test for CF. Do we know this for sure?

We have no family history of CF. But this constant stream of mucous he has had since birth is getting a bit weary. He has struggled to put on weight (just 13lbs yesterday but now tracking the 2nd percentile line) but because he is so alert and happy, no one is worried. It doesn't help that he seems to have these episodes of coughs that last for days and causes him to throw up quite a bit (I do think he had a mild case of reflux in the early days). His nose is constantly streaming... And just when he seems to be drinking a bit more milk and keeping it down and the mucous is lessening, it comes back all over again!

He never has a fever with any of that so I just don't know what to think anymore... Should he be outgrowing this by now?

I am just worried about my little man...

Thanks, Ax

[jetgirl]

My boy has always been snotty and I thought the same when he was younger. What are your DS's nappies like? Is he failing to thrive? Chances are, like me, you just have a snotty boy - mine is a November baby and I think it's just constant bugs. If you are really worried speak to your GP, if nothing just to put your mind at rest. Mine did - she is brilliant like that, I was always taking him in with every cough and cold and she was always very patient with me. My boy is fine, he's 2 1/2 now and still snotty I found raising his cot helped with the coughing at night - the mucus doesn't stream down their throats then, more out of their noses!

GPs should always make time to talk through any concerns you may have.

Good luck x

[Lionstar]

Mucous problems are often associated with lactose intolerance. If you are FF it may be worth asking for help in trying other options. If BF you could try cutting milk out of your diet. Either way I would ask for medical help.

[AnyFucker]

hello, the screening for CF tests for the most common gene mutations that cause cystic fibrosis

so although, if the screening test is "negative" there is still a very, very small chance that a baby could still suffer from the condition

reflux can cause the symptoms you describe...is he on anti-reflux meds ?

his growth seems a worry to you...could you see your GP again and spell out all your concerns ?

your GP could refer him to a respiratory specialist who may suggest doing a sweat test to rule out CF. This is non-invasive and if negative, should put your mind at rest

has he been diagnosed with bronchiolitis at all, over the winter ?

that can make mucous and wheeziness linger around for a while and some babies, esp small ones can get that repeatedly

a build-up of mucous will cause a baby to vomit...that is natural and the only way they can get rid of it

good luck with it x

[UnseenAcademicalMum]

The heel prick test does test for CF, but if you are worried you can ask for a sweat test. In this they collect a small amount of sweat from your lo and test for salt levels. (Children with CF have higher salt levels in sweat than those that don't). My ds2 had this test at about 7 months when he wasn't gaining weight.

However, have you also considered dairy allergy/intolerance which can start off with symptoms of having a permanent cold and/or gastrointestinal problems. It can often be mistaken for reflux. Might be something to discuss with your HV or GP?

Another thing to consider might be sensitivity to dust-mites. Do you have carpet in the room where he sleeps?

I would second the advice of raising the head end of the cot though. We have ds2's cot stood on a few books at the head end and it does really help.

[FalafelAtYourFeet]

I thought the heel prick test was for PKU?

[AnyFucker]

it is for that too, falafel, amongst a couple of other things too

underactive thyroid is another

[FalafelAtYourFeet]

Oh. Thank you! I was totally unaware they tested for CF at birth, must have changed since my day

[AnyFucker]

it is only in last few years they have tested for CF, falafel

Manchester, where I live, was one of the last to come in line...I think it was 2006

[FalafelAtYourFeet]

Ah, I am in manchester area too and DD born in 2003 so that explains things!

[AnyFucker]

[AmazingBouncingFerret]

Angel, I too, have an incredibly snotty baby. She is 3 months old and I have also thought maybe CF. Or allergy to the dog. But TBH I think its just the season to be mucousy. Hopefully as the weather gets nicer our babies will stop being so rattley.

I find one of those little suction things really works wonders at bedtime for helping to remove some of the snot.

[DaisymooSteiner]

AFAIK the heel prick doesn't actually test for gene mutations for CF, but for an enzyme which builds up in the blood of babies with CF, so an 'unusual' gene mutation shouldn't increase the chance of a false negative.

That being said, tests are never 100% so if you're worried it's worth asking for a sweat test as somebody else suggested, to put your mind at rest.

[CharlieBoo]

I think it's just the season for it to be honest, my dd seems to have mucous on chest too but dr said not on lungs last couple of times, and it's teething!!!!!!! I would think cf is highly unlikely but if you're worried talk to your gp.

[angel1976]

Thanks all. In my head, I don't think it is CF. I think just last night, I was a bit upset and panicked a little at the possible thought. I will speak to the HV when I bring him to the BCG clinic next week. The worst it had been was when we went skiing 1.5 weeks ago and he had really yellow mucous, his eyes were crusty and he coughed all night. Unfortunately, given our limited French, had no idea what the doctor said. Gave him a cough mixture that seemed to help and thought it was getting better but it's back again. It just seems like one long continuous cold...

My gut feeling at the moment is that it is nothing too serious (he definitely felt very 'chesty' when he was ill in France) as his mucous is running clear but it's just the discomfort he seems to suffer that upsets me. Interesting point about lactose intolerance... He is formula fed, no one in my family has any allergy though. Is that easy to test for? I don't know what to do if he is though, tbh... The French doctor gave us some lactose-free formula as DS2 wasn't keeping his milk down but he took one suck at the milk and refused it. It does taste pretty awful!

I don't think he will be labelled as 'failure to thrive' as he was born on the 25% line and dropped to 2% and now tracking the 2% line. He's just a little one I think! I haven't brought him to the doctor's as he is such a happy little thing otherwise and my doctor is a little rubbish. I will try the health visitors next time I go to the clinic... Thanks all. I just want to get to the six-month mark, wean him and hope he improves from there...

[bumpybecky]

have you licked him?

I read somewhere that CF babies sweat more salt, so taste salty when licked.....

[woders off feeling like a nutter!]

[AnyFucker]

daisy, yes you are right re. the CF test

a raised IRT level in the blood from the heel prick would prompt genetic testing against the 90-something most common genetic mutations in CF

hope that clarifies it

anyways...very, very unlikely that this is the case here

tasting salty is true in some cases too

[angel1976]

Thanks all for the re-assurances. becky You are not the only crazy one, DS2 was sleeping on me today and a little sweaty and I did have a small lick and tbh, I don't think he tastes extremely salty though it does taste salty. Argh! I have raised the front of the cot to see if it helps tonight. If things don't improve, I will be at the baby clinic next week! Wish me luck.

[leoleosuperstar]

My DS suffers from coughs.

Go to see your GP - he may have bronchitis or something. It is a good sign that he is clearing the congestion on his chest as this can cause chest infections if the cough is suppressed.

I would see your GP sooner rather than later so if your DC needs treatment you can start as soon as possible. I think they advise if a baby has a cough they should be seen by a DR.

Also I was flicking through my DS's red book and saw that the CF test had been crossed out - he wasn't tested when he was born so I am not sure it is always done routinely.

I am sorry if I have repeated anything as I have not read the whole thread.

Good luck.

[AnyFucker]

leo...it is done routinely in all parts of Britain now

I cannot speak for Scotland or Eire though

[leoleosuperstar]

Everything changes so quickly lol. That's good to know.