cystic fibrosis

[madwomanintheattic]

a friend's newborn (3 weeks prem) has just been dx with cf... anyone got older children that i can share stories - she's a bit blown away and i know nothing about cf really. i can do tea and sympathy/ empathy but don't know enough to manage expectations/ encouragement about specifics. anyone found any good resources?

bump?

Hi Madwoman,I don't have any dc's with cf but the Cystic Fibrosis Trust has a good website with lots of information, etc. That might be a good start for you and your friend because the information is accurate and up to date - there may also be a local group to your friend, I know that there is near where I live in NI - hopefully the hospital will point her in the right direction - the group may be attached to the hospital.

It must be an incredibly scary time for her and she is lucky to have such a good friend. x

here it is

There is a parents' forum on there as well, which is really useful.
TBH you only need the information your CF team gives you at the beginning - you have too much to be getting on with looking after a young baby.
They told us it would be at least a year before we could really get our heads round the diagnosis, and I found this to be pretty accurate. There is nothing anyone can say to make it better - however much people tell you treatment and life expectancy have improved it is just not what you want for your child. FWIW DD2 is now 2.5 and keeps really well and hasn't yet been hospitalised, and these days that is more the norm than the exception for a baby with early diagnosis

oh thank you both - i hadn't realised the cf trust had a parent's forum.
lovely to hear your dd2 is doing well at the moment bubble. my youngest has cp, so i'm more than familiar with the 'not want you want for your child' angle, but don't know a lot about cf at all. i think it came up as a query because of poor weight gain initially, (the dd was a few weeks prem too, which complicated stuff a bit) but they have received dx from the hospital and are having weekly appointments at the mo.

thanks again x