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General health

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Original poster

Cystic Fibrosis

19 replies

tudorrose · 09/04/2008 13:22

Does anyone on here have a child with cystic fibrosis? My dd3 is 9 wks old and was diagnosed with it 3 weeks ago, and while we have been bombarded with help and information from everyone from consultants to health visitors (and everyone has been so lovely) it would be great to hear fom someone else who knows what its like as a parent!

OP posts:

MyEye · 09/04/2008 13:32

This definitely needs a bump.
Hope you get the help you need.

Original poster

tudorrose · 09/04/2008 13:36

Thanks MyEye.

OP posts:

ajandjjmum · 09/04/2008 13:41

I know how difficult it is trying to cope with a new baby and come to terms with a 'problem'. I'm sure someone with specific CF knowledge will be along soon.

misdee · 09/04/2008 13:43

there are a couple of aprents on here with dc with CF. hope they find this soon. though i havent seen Charlee for a while (think thats how she spells her username)

Original poster

tudorrose · 09/04/2008 13:43

Thats true, its hard work even without the "problem".

OP posts:

MyEye · 09/04/2008 15:13

bump

getmeouttahere · 09/04/2008 17:58

Littlefish · 09/04/2008 18:21

Bump again for you.

FioFio · 09/04/2008 18:23

This reply has been deleted

Message withdrawn

ChocolateRockingHorse · 09/04/2008 18:28

Hi Tudderose

Yes I have a 15 year old DS with CF (diagnosed at five and a half weeks). He is very strong, strapping and healthy and a great example of how life can be for an increasing number of people with CF these days.

Feel free to CAT me if you want.

Sorry about the diagnosis. 9 weeks is good and early though.

popsycal · 09/04/2008 18:29

From what I understand, and I am not an expert, there is a huge range in severity.

I taught a boy with CF a few years ago who was one of the star players on our football and rugby teams.

Sounds as though you are getting lots of support. Enjoy your baby!

Original poster

tudorrose · 09/04/2008 19:01

Thanks everyone for bumping, I've been to the clinic to get dd3 weighed and she has put on a pound in two weeks so we are on the right track at last. Chocolate thats great about your son, its so good to hear something positive because no matter how many times the nurses etc tell you about it I dont think you actually believe it! I only think of the bad stuff - am terrible doom and gloom person! As for support groups I havent had a chance yet, its all too new to us yet but i am sure there must be something. I havent looked on the internet yet as I know it will be full of scare stories and i don't need that at hte moment!

OP posts:

ellymae · 09/04/2008 20:01

I have a one year old daughter with CF. She had a bowel blockage at birth due to the CF and had 2 operations within 6 weeks. However, she is absolutely fine now - she started walking the day before her 1st birthday, her height is between the 50th and 75th centiles and weight between the 75th and 91st.

I would thoroughly recommend the parents and carers forum on the CFTrust website. I look at it and occasionally post the odd comment but there are loads of people on there who know exactly what you're going through. In fact there are some mums whose babies have just been diagnosed as well so you would be in good company.

The early stages after diagnosis are hard and even now I have bad days but the main thing is that you have a gorgeous new baby who just needs a little extra help to keep well.

Janni · 09/04/2008 20:25

I agree with ellymae about the CFTrust website - you can get answers there very quickly to any specific concerns. My DD is a currently healthy, strapping thee year old with a fantastic appetite and lust for life. She has just started nursery.

Try to have a positive 'can do' attitude about CF - it's something you have to fight. The treatments are very good these days and you generally get very good NHS support.

I'm sure it's a great shock to you, but really,
CF children need to have a normal, happy childhood and that's what you must focus on.
I'm happy for you to CAT me too.

Original poster

tudorrose · 09/04/2008 20:34

Thanks ellymae I will try their website. And hearing about your little one really helps. Its a lot to get your head round with a newborn. But she is completely gorgeous.

OP posts:

Original poster

tudorrose · 09/04/2008 20:38

Thanks Janni, I'm hoping my positive attitude will kick in soon, its all a bit crap at the mo. But i intend to fight definately, I will get there eventually!

OP posts:

hannahsaunt · 09/04/2008 20:56

Really sorry about the dx but can only second all the very positive comments here. I have two d-nieces with CF both of whom are thriving and delightful (as are their non-CF siblings ). Can't pretned that it isn't sometimes stressful but they are blips rather than a constant state of affairs. Take advantage of all the help available through both CF Trust and Butterfly Trust. Hope she stays well .

Janni · 09/04/2008 21:01

It's such early days for you, tudorrose. You probably have to go through a bit of a period of mourning for the 'healthy' child you were expecting, before you can embrace the reality of your LO with CF.

ellymae · 09/04/2008 22:15

Janni is right, you do need to mourn the 'healthy' child you thought you were having. I still shed tears over 'why me?' 'why my little girl'. She is my first born and only arrived after years of trying for a baby and having had a previous miscarriage. You are doing well though to have posted this thread so soon after diagnosis, it took me over six months before I felt able to go on line in search of help. Time will help you come to terms with CF particularly as you spend more time with your dd and see her develop in exactly the same way as your other children

As someone has already said, there are degrees of severity of the condition and you will hear that no two cases are the same. For every bad story you hear there will be another of good health and complete optimism for the future.

From what I've learned from others though is that your CF team are there for you to contact, however trivial your question or problem may be and the people on the CF forum are exactly the same.

Out of interest, where are you in the country and where is your CF team based. We go to the Brompton in London and have no complaints about the care we receive there

good luck with everything

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