Cystic Fibrosis - Tell me I'm being paranoid

[CADS]

DD (8mnths) has been referred for a sweat test because she has partially rectal prolaspe. At the time paed told me they were only doing the test as a precaution and that she doesn't look like she could have CF.

Anyway, for various reasons the test has had to be rescheduled 3x and I suddenly had the "things always happen when you least expect" feeling.

Surely, if she did have CF she would have been diagonised by now and won't be thriving. She is lovely fat baby who's trying to do everything before her time.

History to date:

1. Reflux
   
   
2. CMPI
   
   
3. Broncilitis at 6wks after which she had a lot of mucus and almost seemed to have a cold like symptoms until 5mnths and always like she had crackingly noise in her chest while feeding.
   
   
4. Has had mucus in her stools since 6wks.
   
   
5. Constipation has to have a stimulating laxative daily.
   
   
6. Partially rectal prolaspe of a severe bout of constipation at 16wks.
   
   
7. Chest infection 2x since 6wks.
   
   As far as DH & I are aware there is no family history of CF.
   
   Tell me I'm being paranoid. 99.9% sure it isn't CF but every now and then the thought creeps into my mind.

[saggarmakersbottomknocker]

I don't know anything about the genetics of it CADS so couldn't say if you are paranoid or not.

My dd was scheduled for a sweat test but didn't have it in the end. She had suspected reflux, repeated chest inf. and mucous in stools. She was FTT, though and pretty poorly generally.

Hope you can get it done soon to put your mind at rest.

[CADS]

Thanks saggarmakers.

DD is definitely not FTT. Test is on Monday so not too long to wait.

Bumping for the evening shift.

[Overrun]

CADS :
Hope things turn out alright, my ds1 had two sweat tests ( I have to warn you they often have to test again, when you see the machine it is really old fashioned). In the end he got a reading well within the norms but there was not enough sweat to validate the test. He continues to thrive, so we are not too worried.
The reason why I have posted is to say, that you are probably going to be lucky with the weather, the warmer it is the better. When they have applied the discs, they ask you to go away and come back after an hour. If I was you, I would get her out of her buggy, get her moving around as much as possible to encourage her to sweat.
It's horrible having to do repeat tests. It's not painful, but most chidren don't like it.
Hope I haven't said the wrong thing, but wanted to give you this tip.

[misdee]

give her a lick.

[misdee]

yes everyone is a tad salty in this weather, but people with CF are very salty arent they?

not that i lick people on a regular basis.

[misdee]

i just licked dd3, and she tasted very salty, but the poor mite is extremly sweaty in this heat. she looks like someone has poured water over her head 24/7.

[CADS]

Thanks for posting everyone.

Will give dd a lick tomorrow, she's covered in calamine lotion at the moment.

Feeling a little bit better about it now. I've got a fever and achy joints so I think that is why I've been over emotional about it today.

Does anyone know how long it takes for the results to come back, are they immed?

Thanks for the tip, Overrun. Will make sure she does a lot of crawling around.

[LaDiDaDi]

Results shoul come back the same day but they do need to collect a minimum amount of sweat for the test to be accurate. Try not to worry and I hope it all goes ok for you and dd.

[CADS]

Thanks again everyone.

I am feeling a lot more positive this morning. Have definitely picked up some sort of bug which is why I was feeling paranoid yesterday.

Have had a good lick this morning, no salty taste.

[saggarmakersbottomknocker]

Let us know how it goes CADS

[lanismum]

just wanted to add i used to work in a childrens CF clinic, and the babies were never lovely fat babies, (they were lovely, just very very slim) and they generally didnt need laxitives, they seemed to have the opposite problem < remembers changing babies that had CF >

[CADS]

Hi,

DD had her test this morning and it was negative.

Feeling a little foolish now.

Taek care

[LaDiDaDi]

That's great news CADS .

[Greensleeves]

I didn't post but was silently rooting for you

We had a sweat test done on ds2 when he was tiny and quite ill. It was one of a battery of tests but it was the one that scared me the most. I remember I kept tasting his skin to see if it was salty and couldn't sleep after the test until we got the result (also negative).

Am delighted for you xx

[thewomanwhothoughtshewasahat]

Hi Cads, I didn;t post before - partly coz friends of mine had bad news after a sweat test - so I didn;t feel able to reassure you! but I am so pleased for you that you've got the right result

[CADS]

Thank you so much everyone, you have all put a lump in my throat.

Nice to see there are still some caring people left in this world.

Surprisingly, (or maybe NOT) none of my so called 'friends/family' have bothered to ring/text so see how the test went.

[thewomanwhothoughtshewasahat]

cads - maybe they are too worried and are scared of intruding - I know I might be