Cystic Fibrosis

(5 Posts)
CherryDrop24 Sun 25-Feb-18 10:27:51


My little boy is now almost one and was diagnosed with cystic fibrosis at 2 weeks old following his heel prick test. At the time it felt like the diagnosis turned our worlds upside down, an my husband and I decided we would give ourselves til his 1st bday to get our heads around it all.

Thankfully, he has been doing fantastically well this year, but as his first bday approaches I find myself falling back into those initial diagnosis feelings......when you think about the future and you just start to free fall through all the what ifs and the guilt for giving him this condition (even though we didn't know we were carriers).

So just wondering if there are any other cf parents who feel the same..... I can go weeks feeling great, and then it hits again. I assume that never goes away but does it get easier? Does anyone have any coping mechanisms?

Thanks for reading!

OP’s posts: |
IceBearRocks Sat 03-Mar-18 13:07:47

It will continue...DS8 is severly disabled...just when you think you've got your head around it...something changes. They change ...move from the baby stage's just life ..we still need to constantly reajust.

Tiredstressed Sat 10-Mar-18 14:27:17

Hi - another cf parent here. It does seem to come in waves for me too. My DD is almost 4 now. The first period after diagnosis was quite a blur and busy in getting to terms with treatment. Then things got into a routine and I had more time to think about it, which led to different challenges. Does your cf team have psychology attached to it? I found it helpful to talk to thEm.

CherryDrop24 Sun 11-Mar-18 20:23:47

Thanks for the replies! It's so crazy how you think you are in a good place and then the smallest thing can send you spiralling!

When we first met our CF team they said they were trying to fill the psychology post, and as far as we know that's still the case. We will have to ask about it at the next clinic.

I hope you DD is doing well. It sometimes feels like such an isolating diagnosis so it's nice to be reminded your not alone x

OP’s posts: |
Tiredstressed Sat 17-Mar-18 20:32:20

She is doing well, thanks. Getting a bit annoyed with physio but she’ll cope! At least we should be heading into warmer weather soon, which always feels a bit more cheerful. I get stressed by all the coughs. There are some Facebook forums for cf parents - they are for all ages though so lots of very different experiences. I am not on them anymore but it is good to know that there are others out there.

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