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Children's health

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Original poster

DS to be tested for cystic fibrosis

10 replies

strawberrycornetto · 14/05/2009 22:23

Thanks for asking how we did. I am pleased I raised my worries. The consultant agreed that he needs further investigations, on the basis of his chest and digestive symptoms. He has been referred for a sweat test and also for blood tests to check his immune system.

I am very worriedIn a funny way though I kind of feel a bit numb. Having convinced myself he needed to be tested, I somehow can't accept there might be something wrong with him like this. My beautiful little man.

The only thing I guess is I am relieved he's at least going to be checked properly. I know that there's something wrong and I desperately hope its not something so serious, but if we don't check, I will keep worrying about it.

Any words of wisdom would be greatly appreciated.

OP posts:

girlandboy · 14/05/2009 22:33

Bumping for you.

A friend of mine has a son with cf who was diagnosed at about 4/5 months.

He is nearly 8 years old now and a lovely little chap.

Didn't want your post to go unanswered.

pageturner · 14/05/2009 22:35

Sorry, strawberry, I don't know your background. My ds had a range of symptoms and was referred to the hospital and one of the tests they did for was for CF. It put me into a bit of a flat spin when the doctor said it oh-so-casually, but it was fine. It was just to eliminate it. I got the impression it was fairly standard to rule it out.

Please don't worry too much, though it's easier said than done, I know!

pageturner · 14/05/2009 22:35

Please don't worry too much, though it's easier said than done, I know!

Greensneeze · 14/05/2009 22:37

Sorry you are going through this strawberry, the anxiety must be awful. My ds2 was tested for CF at a few months old, along with various other tests. He had all the apparent signs of CF and we were terrified, I spent the two weeks before the appointment tasting him to see if he was salty and examining his poo. He doesn't have CF though, or anything else really sinister - he had respiratory synctial virus, which affects 100,000 babies a year in the UK. I dearly hope you get the same result as us. I remember how frightening it all was

Hang in there. xxx

Original poster

strawberrycornetto · 15/05/2009 10:01

I am definitely hoping its not CF or anything else sinister. I am just glad he's being tested so we can rule things out. I am still thinking its more likely to be asthma which fits with his history so far (allergies and eczema). Its hard not to panic though, especially when I am trying to play it down with everyone else to look after them.

OP posts:

ellymae · 15/05/2009 13:31

strawberry, just remember that whatever your DS is diagnosed with he will still be your beautiful little man. he will still have all his lovely traits and character and they will never be taken away.

If he does have CF then he will just have to have a little bit more help to get him through, but on the positive side he would get the right treatment to sort out his digestion and chest problems.

I think I've responded to you before as my 2yo DD has CF. I just wanted to say that we're off on holiday tomorrow and my DD is as excited as any other toddler about her first trip on a plane and digging sandcastles on the beach. She is no different to any other child and will have as much fun as anyone else. The only difference for us is that our hand luggage will be full of medicines and syringes!

good luck with all the tests and let us know how you get on

Original poster

strawberrycornetto · 15/05/2009 13:59

Thanks Elly. You put that very nicely. He is completely adorable and wonderful and nothing would make me love him less. As I am sure you feel too, I just want to do all I can to protect him. I hope you and your daughter have a fantastic holiday and I hope yuor daughter stays well

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Greensneeze · 15/05/2009 15:51

Was thinking of you and your little ds today atrawberry, I hope you're managing to stay positive and not feeling too anxious. I know it's a swine having to wait for tests. xx

Elibean · 15/05/2009 16:01

I'm glad your worries have been listened to, but very sorry you have to go through all the agonies of waiting on diagnoses...

I think its pretty standard to test for CF with digestive/lung issues - and right to - but there are soo many other things, non sinister, it could be. Am crossing all for you that it is.

And on the CF front, dh's neice married a lovely young man with CF a few years ago...we saw them over Easter, and he's still doing well. No doubt, if he'd been diagnosed and treated the way babies are now, he'd be doing even better!

Original poster

strawberrycornetto · 16/05/2009 21:57

Thanks.

I am trying to stay positive but swinging between feeling confident he's ok and feeling convinced he's not. Its tough and we are going on holiday at the end of next week so it sounds unlikely our tests will happen until after we get back. Its all I can think about but I don't think DH gets it at all. He didn't know what CF was until I told him yesterday and he is one of life's optimists so he won't even think about it until he needs to. I admire his healthy attitude but it makes it hard to talk about how I feel.

I find myself constantly drawn to internet forums, wondering how things would be and how we would cope if DS is affected. He's been unwell today too and I know I am stressing terribly about his health but I can't help it. I do hope we actually get an answer one way or another, so I know what we are dealing with.

DS is so amazing, he's a cheeky, sweet, beautiful little boy. I just want him to be better

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