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Original poster

Aside from "chest infections" and "poor weight gain", what are the other symptoms of CF in babies?

13 replies

ELF1981 · 30/11/2006 08:10

With the news from Gordon Brown about his son, the news reports over the past day or so have been talking about cystic fibrosis (sp) and explaining the symptoms. The two ones they keep referring to is recurring chest infections and poor weight gain.
Are there any other symptoms, or glaringly obvious things?
I know it sound stupid but my DD has a constant chest problem with the doctors keep dismissing as a viral infection (despite recurring trips to the doctors, they are not taking it seriously). She's also been described as having "poor weight gain" by the HV's. I'm not saying "OMG does she have CF" but just wondering if there are any other symptoms, as the ones that I heard about on the news can be applied to a lot of things, surely?
Also, Breakfast reported that in Scotland babies are tested for CF as the norm in a heel prick test but not in the UK - I thought it was one of the things tested, though I could be dreaming that as my memory retention of things I was told in the immediate days after DD was born, I dont remember very well, and the heal prick test was one of them! Does anybody know what the tests are on the heal prick test?

OP posts:
misdee · 30/11/2006 08:14

give her a lick.

Bluebear · 30/11/2006 08:18

The heel prick test is also known as the Guthrie test - and screens for metabolic disorders such as PKU - in Scotland they use the same blood sample to test for CF as well.
As misdee said, babies with CF extrude salts so a very basic test is to lick her!

lemonaid · 30/11/2006 08:18

It veries according to area of the country what they test for with the heel prick sample. In some areas of England and Wales (Leeds is one, I think) they do test for CF but in most they don't.

Other things to watch for are persistent diarrhoea, bulky foul-smelling and greasy poo or salty-tasting sweat/skin. Not all babies with CF would necessarily display all of those, though.

I'd be inclined to at least ask if she's been tested for CF. Your HV would probably know whether it's standard in your area. And probably if not then I'd push to get her tested.

Bluebear · 30/11/2006 08:21

Try this website for more info on the heel prick tests

www.newbornscreening-bloodspot.org.uk

Original poster
ELF1981 · 30/11/2006 08:29

Dont think I've ever noticed the salty sweat tbh! She does have terrible nappies quite frequently but more recently they are less mushy and more firm so I thought that it was just a baby thing? She's 14 months old now (nearly!).
I'm peeved the docs keep saying its a viral infection and will clear up. We've tried her with Tixilyx (sp) as well as a childs Benalyn type as well but not shifted it. She had a bout of bronchilitis when she was about three months old. I am taking her to the HV in Dec to be weighed again (she's 21lbs fully dressed inc nappy last time weighed) and on about the 25% line and she's supposed to be having one of her injections (the new one) so I'll tackle the cough thing again. Surely they have to take it seriously based on the lenght of time. And what can I do if they dismiss it as a viral infection?

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Original poster
ELF1981 · 30/11/2006 08:29

thanks for the replies btw

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saggarmakersbottomknocker · 30/11/2006 09:41

Ask for a paeds referral if you're unhappy Elf. Was her bronchiolitis a bad case as it can leave them a bit weak chested for a while. The weight sounds OK though - is she in proportion?

My dd was due to have a sweat test. At 4 months she had fallen from 98th centile to off the bottom. She had numerous infections and foul/green/mucousy nappies. As it turned out they found she had heart problems the day before the test was due.

Original poster
ELF1981 · 30/11/2006 12:10

for height she's near the top end of the charts.
When she was born she was on the 95% for weight, steadily dropping, first to 50% then to 25%, the HV umm and ahh and then finally say they are happy.
Her bronchiolitis was quite bad, we took her to hospital as at the time she could not breath properly (though luckily never stopped breathing), but as she was still feeding they let her go home after a few hours to run its course. This was last Nov / Dec time that it happened.

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Enid · 30/11/2006 12:13

try dropping dairy for two weeks

my dsis has jsut done this with neice and it has worked

Original poster
ELF1981 · 30/11/2006 12:14

my issue re the weight is that she was 19.5lbs when weighed on 18th Aug when wearing no clothes, when weighed in late Oct she was 20.8lbs in clothes and nappy.

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Original poster
ELF1981 · 30/11/2006 12:20

Enid, is the dairy in reference to chest or to weight / nappy?

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lemonaid · 30/11/2006 19:30

It's really not at all unusual not to put on any weight over that sort of period at that age. I'm in a due date group from when DS was born with a lot of other women and there were quite a few who put on no weight, or very little, between their 9 month and 12 month appointments and/or between their 12 month and 18 month appointments (the Americans being very keen on regular checkups). They were all fine and healthy, just becoming more mobile.

The important issue is whether you're worried, but it doesn't necessarily have anything sinister behind it.

Original poster
ELF1981 · 30/11/2006 20:57

lemonaid - I've kind of come to terms with her weight. I was worried to see her maintain a line for so long then drop, maintain and then drop again iyswim but now I am okay with it. I'm v concerned about the cough she has had for months on end which the docs keep fobbing off as a viral infection, but I have another appointment on Mon

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