phonecall to say cystic fibrosis

[mum2be257]

Had the dreaded phonecall this afternoon with results from blood tests and my daughter has been tested positive for cystic fibrosis, have not stopped crying since! stupidly looked it up on the internet and read all t he horror stories. have an app tomorrow with the consultant. Am so scared!!! no one on either side of our families has had this or is known to be a carrier!

 

[Ilovehim89]

so sorry to hear this. My thoughts and prayers are with you

 

[maryp0ppins]

This caught my eye as I was scrolling down the bnb main page.
My youngest sister (now 15) has CF, it is a very terrible disease but MANY MANY MANY people live long lives these days.
I will be keeping you in my prayers.
Nobody apart from my sister has the disease, myself, brother and other sister do not even carry the gene.
My advice to you is to keep your child very active from a young age if possible, this is what my parent's did with my sister and as a result she is in great health.

 

[maryp0ppins]

I just wanted to add that a cure for cystic fibrosis is just on the horizon, it will come in your daughter's lifetime I am sure of it.xx

 

[angelic000]

Sorry hun I am bnot on here much and have just seen your post I went through exactly the same thing in Feb this year I will message you x

 

[RebeccaG]

Oh hun - I don't know much about the illness but am thinking of you through this difficult time. xxx

 

[Midnight_Fairy]

Oh hun xxxx

 

[xLisax]

Just seen this

Firstly have more of these

It is such a shock when you are told that someone you love so closely has CF..I remember the day so clearly. I was exactly the same as you..googled and panicked!

I just wanted to post a few pictures of my little man...he is 3 years old with CF..you'd never tell, we have been vigilant with bugs and medication from day one and *touch wood* his CF team are over the moon with him...he has never had a chest infection/been hospitalised etc (apart from birth, but thats a whole other story!) Honestly, it all sounds bad but I can, with 100% honesty say that I never thought I'd feel this way now..its a way of life and Max does everything that every other child does..my 3 month old has been iller than him with coughs/colds so far!

https://i707.photobucket.com/albums/ww75/Maxs_Mummy/787.jpg
https://i707.photobucket.com/albums/ww75/Maxs_Mummy/DSC04677.jpg
https://i707.photobucket.com/albums/ww75/Maxs_Mummy/DSC04400.jpg

If you EVER need to talk, please PM me

 

[xLisax]

& Ive just seen you're in Cornwall..me too!! Whereabouts are you!? xx

 

[Midnight_Fairy]

what a gorgeous lil man x

 

[xLisax]

Thank you so much hun x

 

[mum2be257]

Thank you for your post, your son is gorgeous! Was he diagnosed via the heel prick test? We are doing ok at the moment just started new antibiotics as she has pseudo so now getting our heads around that! We are near redruth, where are you? X

 

[mum2be257]

Ah just seen your in porthleven, not too far at all! X

 

[babyerin]

Wow how gorgeous is Max!!

Mum2be257 i'm glad you have support on here from xLisax. Years ago the prognosis was poor for CF (im talking decades ago) but the treatment for this has come along in leaps and bounds, and often the web is full of outdated horror stories.

Although there may be tough times ahead please be assured that the prognosis for your daughter is very good, and she will be a lot more fortunate than those with the same diagnosis twenty/thirty years ago. Best wishes to you both

 

[xLisax]

Thank you babyerin

Mum2be..wow we're not far at all..small world So are you covered by the CF Team in Treliske?

Max was eventually diagnosed by the heel prick but it was a bowel blockage at birth that got them thinking he had CF..he had surgery at 2 days and was in SCBU for 4 weeks..I'll link my birth story for you

https://www.babyandbump.com/birth-s...mber-but-only-just-home-photos-now-added.html

All a bit traumatic but you'd never know now

How are you getting on with giving Sophie creon, vits, meds? I found that all sooo daunting in the beginning...but now Max takes it all himself, I just get it all ready in syringes/on a spoon etc!

xx

 

[mum2be257]

Thank you for all your support!! yes we are at Treliske, they are great aren't they! Meds are all going well, she takes them all so easily! Just getting the hang of the nebuliser now due to the pseudo, that was scary! I think the hardest things is trying to work out what is newborn baby stuff and what is Cf related! I am so paraniod, like all the little noises x

 

[xLisax]

They are so lovely over there yes! We had Maxs annual review on Monday and luckily everything is A-Ok!

You sound so much like I did at the start..I could write just what you have..I had just that problem..and I'm still awful now when Max has a sniffle..I get so worried that its going to be awful and he'll end up in hospital because he has CF...he never does!!

I'm so glad shes taking meds well! Thats one less battle hey!

Have they introduced you to physio yet? How old is little Sophie?

x

 

[mum2be257]

She is 11 weeks tomorrow. yes started physio straight away, twice a day. If you don't mind me asking...how has it affected max as he is older? x

 

[xLisax]

I can honestly say not at all hun..and I 100% mean that! The only thing we have to do is go to clinic every 8 weeks and he can't go in my dads hot tub! Thats all that we've come across so far! Hes starting pre-school in January, he does everything that a normal 3 year old does!

I think when its caught so young it can be so well managed and stop it from turning into something nasty! Max has only ever grown bugs that normal children get on his cough swabs and hasnt been hospitalised since he was born and once when he was a few months old..he had bronchilitis!

It really will become such a way of life hun and you'll think about it..but not with sadness..its just part of Sophie & she will grow up to be a lovely little girl with so many opportunities in front of her..just like every other baby!

Ask as many questions as you want hun..about anything! I dont mind! We also went through CVS with Evie..to see if she had CF before she was born..luckily she isnt even a carrier of the gene!

xx

 

[mum2be257]

Thank you, does he take meds well? What does he understand/know about it? Does he willingly do physio? Its such a whirlwind at the moment! Its great to have someone to ask though as much as the doctors know its different actually going through it! X