Oh dear me... now they've given me something else to worry about... ds is going to be tested for Cystic Fibrosis...

[emkana]

When he was in hospital in Germany in August they did the sweat test and said it was okay.

Today the lung specialist said it should be repeated because in his opinion the reading from Germany was borderlinge at 38 mmol or whatever the unit is.

Looking on the web it mostly says over 60 = CF, between 40 and 60 borderline, with some pages saying from 30 onwards is borderline.

Am now obsessively licking ds and thinking he tastes salty.

His weight gain is good, that's a good sign isn't it?

yes, good weight gain is a good sign.

all my kids taste salty as they are sweaty kids, but they are all porkers, even the little one gains weight even tho she is small.

I remember Psychomum making me lick her DS and he tasted salty too - he was just an excessively sweaty baby

bump

My ds2's medical records arrived last week, including the results to his 4 sweat tests. It states in his notes exactly what you have found: a sweat chloride of more than 60 mmol/L supports the diagnosis of cystic fibrosis. 40-60 mmol/L suggests but is not diagnostic of CF. A sweat chloride of less than 40 mmol/L is normal and the probability of CF is low.

These are the guidlines that clinical chemisty uses at our hospital. In the end we had the blood test which proved him to be negative for the 29 most common strains of CF. Perhaps you could ask for a blood test to be done as well?

I agree with heartmum, ask for a blood test or even another sweat test?

Even if its just to put your mind at rest.

Let us know what they say x

emkana, FWIW, and without wishing to sound too terminally optimistic about everything, if the worst came to the worst and he did have CF, with a result like that it would have to be a very mild form. Once the DNA tests became available it transpired that there are actually adults who maybe have a bit of a susceptibility to chest infections but no more than that and who turn out to have CF but had never been diagnosed with it. I would bet he doesn't have it, I think they are just trying to be really thorough and rule things out.

Thanks guys, that's really helpful.

tamum, optimism is good for someone as intense and anxious as me.

When I saw the specialist yesterday he said "I think you're being a wonderful mother to your ds." I wonder if he felt he should say that after reading in one of the letters by our local consultant "Mrs. X is very intense and requires a lot of support."

By the sounds of it they're planning to get ds in for a whole day of test within the next couple of weeks - blood tests for immune deficiency, a repeat sweat test, a ph metric test... to find out if there's a cause for all these infections. If no good then next step would be a bronchoscopy.

Ds is now on continuous AB's for the next few months, to see if that will keep the constant infections at bay.

How nice to hear something positive about you from the specialist. Sorry you have this additional worry about DS, but at least you know that the specialist is taking things seriously and moving ahead with tests etc. So that's got to be good after all the waiting around.

true singersgirl, it's good that things are moving forward at last.

emkana, i feel for you, my ds is having a sweat test next wed as they think he has cf, he is 2 and he is chunky athough very short. I think he tastes salty but he could just be a sweaty baby!
I hope your ds is ok.

Em - glad that you have had a good appointment with someone who sounds like he's at least part human

Try not to worry (huh?) about the sweat test. It's sounds unlikely that he has CF.

charley - good luck for your test next week

Emkana, was just looking up to hear how you got on. I hope things start moving now, and try not to worry about testing for CF, hopefully it and many other things can be ruled out very soon.