should i get DS tested for CF or am i being silly.

[tennesseyhennessey]

Ok i think im probably being a bit silly but...
Ds since newborn has been ill, reflux, constant croup/ear infections as well as eczema.

Heres where the CF comes in. My nan like DS has always had problems with her skin and with coughing/lungs like ds. She has been diagnosed with CF at the grand old age of 82.

He is now being seen by a consultant for his skin. DS has always been a poor sleeper, cougher, snorer, snotter, sweaty child. Consultant diagnosed rhinitis on the spot. Since researching rhinitis it has sometimes got links with CF.

He is currently suffering from some sort of viral infection, lots of coughing with lots of mucus, trouble breathing etc. Mentioning Cf to his consultant never crossed my mind as we have only just found out about my nan. She mentioned when i spoke to her that maybe i should get him tested, because in her words ' he's got all the same problems as ive had'. Im worried that i am being totally over the top and dramatic but after reading symptoms such as 'big greasy poo', 'big appetite but no weight gain' which he also has, im wondering if i should mention it? consultant also asked if i was concerned about his growth which at the time i didnt i just thought he had holes in his feet!

There is certainly no harm in asking your GP following your nan's diagnosis.

Sorry - consultant, not GP :)

I think CF is tested for as part of the heel prick test which will have been performed on your newborn when in hospital. The results sometimes take a few weeks to come through though.....have you had the results back from this yet?

I would find out more and not leave it, my DS is a carrier of CF and his is a very rare mutation . Not sure , but does the newborn test pick only the most commonly seen ones?
Also it is my understanding ( might be wrong!!) that if you are diagnosed late in life it tends to be the rarer mutations.

My DD has just been tested for CF, thankfully results negative but it does mean I have obsessively read everything about it on the Internet. The newborn heel prick test does only test for the most common 14 kinds out of 800 different mutations but those 14 types cover 95% of cases (might not be the exact numbers but it's something along those lines).

She was tested because she has had a constant snotty ratty chesty cold from only days old which has never really cleared up (now 8m), she also contracted proper flu at 6 weeks and tested positive for haemophilis at 8 weeks, so is picking up bugs left right and centre. Her poos often have great big strings of mucus in them, like spaghetti (sorry, maybe tmi!). She was born on the 50th centime but has drifted down to the 2nd.

The test itself is very quick and not traumatic at all - they paint an area of the arm with a solution which stimulates sweat, then pass an electric current through some patches stuck to the area, then collect resulting sweat with cotton wool patches under plastic. It took no more than an hour and the results were phoned through a couple of hours later.

In your position, particularly with that family history, I'd push for the test - if only to rule out CF so they can investigate what else might be up (DD is now being tested for a condition called Primary Ciliary Dyskinesia which has many of the same symptoms).

Best of luck with it - it's horrible to think of your baby having something like this, but better to know I think.

My 7 yr old was tested for CF two years ago based purely on a cough. He didn't have CF but does carry one of the CF genes which we subsequently discovered was passed on from me.
None of our other 4 children have been tested for the gene yet.

Zgaze , this may be totally off the make but has your DD ever had a milk/ soy exclusion trial?. mucous in poo , rattly chest etc could all be exacerbated by milk allergy. DS had every bug going until it was established he was allergic to milk.

Off beam, not off the make .... my bloody phone

No she hasn't, although I have wondered about that too. However she was exclusively BF until 6 months (and for much of that I was practically dairy free save a tiny dribble of milk in some tea) and she was ill all that time. Now she's eating everything and symptoms don't seem to improve / worsen whatever she eats.

Some bf babes can react to dairy AND soy proteins in BM. A splash of milk in tea could be enough. There is a lot of hidden dairy and soy in supermarket food too.

Thank you for your replies. He is back on the 25th at the consultant, my mum has been going to my nans appointments with her so is going to write some history down for me about mynan and her appointments because it is a rare form that she has.