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cystic fibrosis Rss

does anyone out there have kids with cf? i have a 6 month old boy who has cf, he is doing very well not showing any symptoms as yet would like to chat to other parents that have or are going through treatment. i live on the gold coast with my partner

Renee,Gold Coast

we have just been told that our 2 month old has cf we are going to sydney very soon to meet the nurses and doctors at the cf clinic i my self dont know a lot about it and have been to scared to read about it my son has does have a few symptoms but he is still well.
Yes hi renee.Believe it or not, my names renee too.We live in melbourne, but we are coming to the gold coast in september for a holiday.Anyway yes, we have a 2 month old with cf.She is on half an enzyme tablet with every feed and we do physio on her once a day.it is very hard to come to terms with.Ive been trying to meet other familys in the same situation, and it is hard, it feels like theres not many out there, but there is cause since we've found out about jade ive heard of about 10 other people with it, people that know people sort of thing.So i'm here if you want anyone to talk to or ask any questions.i like to think ive taught myself alot about cf in 5 weeks.
And laci, it is a very scary thing, but i think the more you learn about it, (which you will), the more better you will feel about it.There is so much more hope out there with cf nowdays than there ever was.The last 10 years, the lifespan of a cf person has doubled, i know someones who's about 27 and has healthier lungs than me or you, and i know of someones who's about 47, is a basketball couch with 3 kids.Technology is thriving in leaps and bounds when it comes to cf.
[Edited on 21/05/2007]
Hello Renee(s!) and Laci!

I too have a little boy with cf. He is nearly 9 months old and doing well. He is developing like the rest of his little friends from Mums group - just started crawling and pulling himself up on the furniture!

To us he is a gorgeous little boy who just needs his meds to keep growing up big and strong. We are in Melbourne and have been very impressed with both the RCH and CFV. We will be rattling our tins tomorrow for 65 Roses Day.

I would love to chat whenever you like.

Nicole
Hi All,
My 5 week old daughter has had the genetic test come back for CF and we have had the sweat test and now waiting for results (another week and a bit's wait). I hadn't noticed anything unusual - but I don;t know what to look for either. What are the symptons of cf in babies?
Thanks
Liz
Hi everyone I;m in NZ with a 41/2 month old dd who was diognosed at 6 wks and has shown symptoms since birth but good news her pancreas is functioning normally so don't need enzymes yah. Liz some babies never show symptoms but could still have it some never get sick others like my grl show straight away depends on mutations of cf we have df508 r147.
HI Liz!

Just wondering how you got on with the sweat test results? Hope you and your family and little daughter are doing ok.

My little boy has CF and is nearly 11 months, I'm more than happy to have a chat.

Nicole
Hi
Thanks Nicole and All!

We have the appointment with the paedatrician in August to get the results. Over the phone his assistant told us it seemed to be ok - so hopefully all will be ok -she may just be a carrier (?). We will still need to get genetic testing either way for me and DH - particularly for any more kids we have. Anna is our first.

We did some research into the specific gene mutation that the test showed and it is also linked with causing infertility in males (the van deferens - carries sperm from testicles to penis- doesn't form). It's all a bit frightening.

Will let you know once we've seen her dr.

Hope all is well for you.
Liz
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