dd being tested for cystic fibrosis

[Boco]

I had a call from the hospital today asking me to bring dd for sweat test and more bloods as the consultant thinks she may have cystic fibrosis. She's 4 and has had pneumonia 5 times in the past few months.

They mentioned this in passing last October, but I assumed they'd dismissed it. We saw the consultant again last week and he mentioned that he wanted to do tests quickly, but wasn't really expecting this.

Feel rather panicked by the idea know nothing about the condition but assumed it was hereditary.

Has anyone else had testing for this? I probably shouldnt' even think about this until Tuesday, but hard not to.

www.mumsnet.com/Talk/special_needs/655581-Experiences-of-CF-cystic-fibrosis-come-and-share-I- know?rnd=1227728986477here

Sorry you're going through such horrible worry, boco. Sounds like you are handling things amazingly well. Good luck with the very busyness. Really hope the results will be clear.

Not to worry you but it was similiar to you. DD had been in hospital with 2nd lot of pneumonia. she had been x rayed but her x ray wasn't checked so she was released. So about a week or so later a consultant from the hospital rang me at home and asked me to bring in DD for a sweat test. when i asked her why she said she wanted to rule out CF as dd has had a few hospital stays with "breathing problems". she has no other symptons. she is growing but is short but not worrying so and is average weight. she has no problem with her Poos and i dont think that her skin tasted salty.

On the plus side - since then dd has not had a hospital stay and is on perminant anti biotics / nebs and is so well!. Getting her diagnosis has transformed her health for the better.

Dd sweat tests came back positive but reading this thread lots of others came back negative! Fingers crossed you get a negative result.

We do not have any known cases in our family. EX knowns his family history. Mine family history is sketchy.

boco if you need taking out at the weekend let us know

Peppa it does sound quite similar doesn't - i guess it makes sense why they're testing at least. Was kind of hoping that it's ridiculously unlikely. Although obviously i'm not thinking about any of it AT ALL.

Franny do you mean taking out assassin style? Inlaws coming tomorrow for whole weekend, so yes i'd love to be taken out, but unfortunately they'd think it v. rude. thanks though x

Just popping in here to wish you all the best, Boco. It's pointless for me to say don't worry but here's hoping you'll be too busy to think about such things unless you need to.

Lots of love from me, Boco - I will be thinking of you and DD on Tuesday. Give her a cuddle from me - and have a big squeeze yourself too xxx

Boco - Sending you and your family lots of love.

Boco I truley hope your result is negative. The witing is awful, I know.

DS1 was tested numerous times for CF, each time until recently came back in the grey area. Thankfully we got a negative result finally. It was such a relief.

I hope things are as positive for you

ok well just shout if you want your inlaws taken out then

Boco, I know how you are feeling, my DS was tested for it a few months back, was about 6 months old at the time, had been very poorly at 4 weeks old then had an abcess a few weeks later, they just wanted to rule it out.

His results were clear, but I remember the waiting before the tests was hard so I feel for what you are going thru at the moment.

Am keeping everything crossed for you.

Hey lovely!
Fingers crossed for you. I'll be thinking of you on Tuesday. Will be at hospital with DD too for her bits and pieces.

It's great that the doctors are doing all the tests available to them to rule things out. Sounds like they are taking DD's bouts of pneumonia very seriously.

xxx

Boco I am so sorry to hear this, how stressful for you

I hope that the tests aren't too traumatic and that the results are conclusively negative.

Sending you all lots of love xx

Thank you for all the good wishes. VVVQV, hope everything ok with your dd too. x

oh boco darling!

test results and waiting and worrying and hand wringing. horrid horrid horrid.

you are right not to google - very right.

i hope you can keep busy and franny doesn't kill you.

xxxxxxxxx

Thinking of you and dd, Boco.

Good luck tomorrow Boco.

Thinking of you tomorrow Boco.

Wishing you all the best for tomorrow.

Maybe write down your questions so you don't forget them?

I will be thinking of you tomorrow Boco. I hope it goes well.

Thank you

Have been doing great job of not googling, and appreciating that it's just a routine ruling out thing and very unlikely and have cultivated perspective and calm. [lies shamelessly]

Good luck for tomorrow boco!
Btw, did you lick dd?

I did lick her, and got my mum to lick her too, she got quite cross about the licking - and she didn't taste salty, so, that's good.