Doctor wants to test DD for cystic fibrosis

[mrsrsp]

Hi everyone,
My daughter has been really poorly with several chest infections and digestive problems for almost a year now. (She's about to turn 2). We saw a different doctor the other day and now he thinks that she needs to be tested for cystic fibrosis.

We are due at the hospital next week for something else so he has got in touch with the paedeatrics we are seeing then to tell them he wants this testing.

Really scared and can't stop thinking about it, just want answers now the waiting is so awful.

Anyone else had experience of this kind of thing?

x

My DS had CF tests as he had had real problems with his chest. The test was very easy - they put a little gel pad on for 5 minutes to make that area sweat, then bandage a thing that collects the sweat on. Child then plays for 30-60 minutes, they pop the thing off and take it and test it.

We had the results within an hour - which were negative

Yes my ds had this test done as he kept getting chest infections and his breathing was almost like a mucussy purr.

I think they do is a rule out for children with repetive chest infections, as I think its really rare as a condition.

Thanks for quick reply, glad you DS results were negative.

I'm hoping that when we get the test we'll get the results quickly.

Reassuring to know that there's chances of it being negative. Probably more chance of that than it being found positive (if I think logically). Trouble is I'm not being very logical at the moment.

My DS has CF if you want to know anything ask away, or you can email me

[email protected].

Also just to give you a tip, NEVER GOOGLE about CF there is some really mis guided rubbish in the world of Google that will upset you. Any info you need should come from the cftrust

Its normal to eorry and be scared but the chances are its negative and then its off your mind for good, and if it is positive, then its best she is diagnosed now to get treatment started.

DS1 was diagnosed at 2 and after his medication was started he was a different child, he was really well and he has colour in his cheeks it was an amazing turn around.

Hope your appointment comes through quickly.

Both kids have had this done. With DS they did kinda warn us to expect a positve result as he filled his little watch thing so quickly and his skin tasted of salt if you licked him but both were negative but both gave negative results.

It is worrying but it is a very simple test which is pain free and if it is CF, the earlier you know the quicker you can start treament.

hi just wanted to agree with Charlee DONT GOOGLE! - my daughter's test came back positive and we have neen living with CF for 2 years and to be honest dd is SO much better now she is on the medication so an early diagnosis can be a positive thing.

the chances are your tests will be negative. will check back this thread so let me know if you need any support/advise.

If you did get a positive result come over to the Special Needs board as there are several MNetters on there whose children have CF and we try and support each other.

another thing they might look at is bronchestis which my Dd has ,they orginally thought she had cf so can understand the fear

another problem can be the Igg/Iga levels which can lead to more chest infections also the gut to

we gotlucky and ended up under royal Brompton can not praise them enough

UPDATE

Hi all, thanks for your replies. Well today has been interesting, was on our way to hospital and about halfway there when dd projectiled vomitted everywhere so had to come home as she was so poorly.

So no further forward at the minute, will let you know when we have more news.

We have shared care with Brompton Pheonix but we havr to travel 2hrs to get there so we only see them for annual reviews and in emergencys.

I shall keep my fingers crossed for you mrsrsp, remeber you can email if you need a talk about it.

changedname1 - Are you on the cftrust forum, im wondering if i know you.........?

(Its Charlee by the was - i am in disguise!)

Hi charlee, i look at the boards but don't post on CF forum. but i have been on here as ilovepeppa pig and JulieR.

i am at the royal london with shared care as it is about an hours travel for me so we go every 6 months unless an emergancy.

my dd has had a good winter. only 1 inpatient stay for 3 days and only 2 weeks off school so i am counting my blessings.

Are you claiming DLA (if you dont mind me asking!) I filled in my form (on my consultants recommendation) in mid feb and it is still being processed! awaiting consultants reports apparently

logged to see how you were MRSRSP so sorry i have hi jacked your thread. us mnetters with Cf dc tend to be lurkers rather than posters so i am always thrilled to find a fellow parent with the same life more or less as ,me!

Hello, thought I would post an update, took daughter for her appointment at the hospital for her NF and asked about the CF test. They had not received info from out GP...grrrrr. Luckily we had copy of letter. But doctor at the hospital said we needn't rush in to testing for CF. However, daughter is now all muccusy again and I wish we would've had test done for peace of mind.

Recently she had fecal imapaction so we're on movicol for her now...it's never ending.

If her chest carries on I'm definitely going back to our doc to have a moan and get her tested or I'll be wrrying forever.

hope everyone is ok x

i would just for yourown peace of mind,good luck know how worrying it can be