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.

Boco - have very little advice I'm afraid but didn't want your post to go unanswered. I hope everything turns out to be ok with your dd. My friend's little girl has cf - my understanding of it is that it's a genetic condition where both parents have to be carriers of the cf gene. I hope someone comes along soon with more info for you.

Sorry don't much about it, but hope everything goes okay for you little girl x

Oh thanks. I thought no one was going to answer then throwing me further into my wallowing and worrying.

Again, no knowledge but hope everything goes well.

Waiting for tests and results is awful isn't it?

It is. My challenge for next few days is not to google!

I think I would find that impossible Boco!

You are probably right to resist if you can though. Do you have any idea how long you will have to wait for the results?

no advice other than yours, which is not to google

am sure someone will be along soon with some words of wisdom

I hope everything works out ok for your dd. Years ago I worked in a hospital and I always remember the parents of kids coming in for sweat tests were ever so worried.

Definitely don't google, but you might want to have a look at the Cystic Fibrosis Trust site.

Wats no, she's gone down in weight a lot recently and hadn't grown in the past 4 months. She's lost lots of weight, but i put that down to all the pneumonia as she doesn't eat when ill. Glad yours was clear. She had bloods taken on Thurs when she saw consultant so am a bit concerned there was something there that made them decide. But I need to not think about that. It's probably not is it.

Hi boco, my 23mo DD has CF but was diagnosed shortly after birth due to a bowel blockage (a complication of CF) requiring surgery.

You must be very worried indeed and dreading getting bad news but the main thing to get across to someone in your position is that the outlook for children with CF is so so much brighter now than ever. Yes, there is a lot of hard work that goes into keeping them fit and healthy but they can lead a 'normal' life. In fact I've just got back from a park this morning where my DD was on her feet for 2 hours, running walking and jumping in puddles. She's flat out asleep now naturally but I have to say that she is fitter than me!

I know when dd was diagnosed I went through every emotion - anger, heartbreak, self pity and annoyance at people saying things to me like I've just done above (!) so there is no right or wrong way to feel.

Apart from the pneumonia, has she had any other health problems? typically children with cf are classed as 'failure to thrive' meaning they struggle to put on weight even though they can have huge appetites. They can also have really nasty smelly explosive nappies as babies TMI sorry. Also, a lot of parents say that if they were to lick their childs skin it would taste very salty. Before we were given a firm diagnosis I remember kissing my daughters head in hospital and then licking my lips before thinking 'what are they washing her in?'

There is a forum for parents and carers on the CF Trust website which I find really useful. Some people don't like it as they think its full of doom and gloom but I find it a great place for support and advice.

If you don't feel ready to venture on there yet I would be happy to help you out more if you like

Keep strong and I hope the tests are all done properly and you get the results (good or bad) as soon as possible

Boco. My DN (dear neice) was just diagnosed as possibly CF. She is 3. She had quite a lot of blood in her nappy (before she was toilet trained obviously) about 6 months ago. There are no other signs or symptoms. There is a test they do and high number indcates CF she is about half way between perfectly normal and a CF dianosis. So, it is very unclear. CF is absolutely hereditary. In fact it has to be inherited from both mother and father. There is no other CF anywhere in either my brother's history or my SIL's history. So we don't know what it is. Apart from the blood (and I think polyps in her colon, there is nothing wrong with her. She runs around and appears to be in perfect health. I would say her physical coordination and intellect is ahead of my DS who is 5 months older than she is.

I don't know if this is helpful but I wanted you to know you are not alone.

Hi Boco,

I had the same experience with my dd who was two at the time ands also very prone to developing pneumonia. I totally understand why the consultants had to rule CF out, but I did feel very panicked at the time about it.

DD's tests (which were very straightforward and not at all upsetting for her) came back as negative. I think that I was given the results immediately.

Good luck.

Florence

Thanks - ellymae glad your dd is doing so well. Am also glad that things are brighter nowadays, tbh I know so little about it, but assumed it was Very Bad.

I don't think i should look into it yet, after Tuesday if it's bad news i will, so thank you for links. Luckily she said that we'd have the tests in the morning and then meet with the doctors for a 'plan' and that we'd know straight away the results, so at least there'll be no waiting.

I was wondering if you had licked her too! My dd2 was also tested and clear - but in N.Ireland I think it was part of the heelprick tests. My older two were heelpricked there.

boco I think you are wise to keep away from things til after the tests, it will only add to your worry and you may not have to deal with cf at all.

Hmmm it can be bad at times I won't deny it but there are specialist cf centres around the country with some excellent drs and nurses to help with the treatment and I personally have a fantastic support network or medical personnel through the NHS who I can upon any time of the day or night

I haven't licked her - she's with my mum atm, but will lick her when i go and pick her up!

Sorry am fretting onto the internet, but it may be nothing. I think I worried more because she had bloods on Thursday and the dr just mentioned repeated them all on tuesday so it wasn't clear to me if that meant something ominous. Have got things to think about now if it is that, but hopefully it won't be so I will NOT google or panic. Thanks x

My two were both tested after recurrent chest problems. DS's klittle watch thingy that they collect teh sweat with filled up so quickly that we were warned to expect a positive result (apparently people with CF sweat more profusely). DS also had salty sweat, he used to taste almost seawater-like sometimes. We did have to wait for the labs to process the tests though so I think we waited a few days for the answers.

DD didn't grow well and failed to put on weight for a long spell. She remained at 103cm for almost two years and was the tiniest in her class for a long time. This failure to grow/thrive has now been linked into the poor sleep and appetite loss she was getting because of the chest problems. DS growth also stuttered but he has now reached almost 6ft in height, sadly DD stopped growing at 14 so has remained 5ft 1.

No experience or advice whatsoever about CF but couldn't pass by the thread without sticking in my head and saying, thinking of you mate.

I'm thinking of you too Boco. I hope everything turns out ok. x

my dd2 was tested for Cf last year, due to failure to thrive.

one thing I would say is - when you pick your dd up and lick her, if she does taste salty then that might not mean CF. dd2 tastes very salty (there's a sentence i never thought I'd write!) but she came back as negative for CF

the test itself is quite easy - just something strapped on her arm to make her sweat, then hang around for a bit, then the sweat collected. dd2 barely blinked (she was 15 months or so at the time) except she didn't like her arm being held while they strapeed the thing on.

Hi Boco, thinking of you.

TBH I'm surprised they haven't tested for CF before. I know at our local they do it as a matter of course if a child has more than one bout of pneumonia. I agree with justabout in that it's not necessarily because they think she has it - more to rule out that she doesn't. dd should have had a sweat test because she was failure to thrive and her nappies were very mucousy. In the end they got to the bottom of it before she had the test. I hope everything turns out ok. x