A good friend of mines DS has been diagnosed with CF

[MuppetsMuggle]

Trying to find out info on Cystic Fibrosis, how to other parents deal with it on a day to day basis etc. How your children are and how they are coping etc. My friend didn't know what to think and is having a hard time dealing with it. We are close and I want to be able to help her through it iykwim.

TIA

[AnyFucker]

have a look here

[MuppetsMuggle]

thanks x

[bubble2bubble]

The CFTrust website is the best place to start, though there is a massive amount of information on there, most of which you dobn't actually need at the beginning and some of which is quite frightening.
As most babies these days are diagnosed at around 6 weeks ( I am assuming this is the case with your friend) I think most people forget that as well as the diganoiss you are dealing with a 6 week old baby, and that's hard work!
FWIW DD2 is now 2.5 and has not yet been hospitalised - she keeps incredibly well for a child with CF, and with early diagnosis now this is largely what they expect
I think one of the best things we were told at the beginning was that we would need at least a year to get our heads around the diagnosis, and I found his to be pretty true. Time doesn't really make the pain go away but it does allow you to deal better with the day to day more rationally. Hearing of a new diagnosis always makes me a bit but it's honestly not all gloom & doom these days

[ilovepeppapig]

hi my daughter has CF she is 8. she was diagnosed at age 5. she is on daily medicine and needs daily physio but on the whole is well. I tend to only know she is CF when is is ill as a cold, cough effects her far more then other children. You could not tell she has CF to look at her. She is a gorgeous lively cheeky little girl.
Yes i fuss her, and spoil her, and i treasure her. It is tough sometimes. she has 2 serious hospital in patient stays but i work full time and i manage. Her school is great. she has a community nurse that visits us at home and at her school.

she does horse riding, trampolining,singing club and is about to start brownies.

When she was diagnosed i was filled with dread and fear but they know so much now to manage CF and she has excellent care from her hospital team.

[strawberrycornetto]

I was going to recommend the cf trust but I see that someone already has. DS has been suspected of having CF for about 6 months and we only just got an all clear last week. While I have been worrying I found their parent forum really helpful and full of useful information.

I hope your friend and her DS are ok. From what I read, things are far more positive these days.

[MuppetsMuggle]

Bubble, my friends DS will be 6 in July and its only now they are thinking its CF.
You wouldn't think he had anything tbh, hes happy and healthy other than that.

Will have a good read on the CF trust website. Thanks so much.

Peppa pig its nice to read it from another parents prospective iykwim thank you x