How many have CF?

[mum2be257]

Just wondering how many people on here have children with CF and would like to hear your stories?!

Sophie was diagnosed at 3 weeks old via the heel prick test, after the phone call we were called into the hospital the next day and started Flucloxicillin (spelt wrong!!) creon, vitamin E and Dalivit straight away. She has had one bug that I can't remember the name of and was given Clarithamycin for 2 weeks. We have recently had a cough swab showing Pseudo so has now finished Cyproxin but has another 2 months left of her Colomycin via nebuliser. Sophie is thriving andher weight gain has been good and steady. She is now 15 weeks old. I think we are finding it all more 'normal' and routine now, there are some days when I feel low and sad for her but like my Oh says, she is not ill, she has a condition that at the moment doesn't really affect her, it is all preventative. Sophie is our first child but we are NTNP.

Would love to hear your stories and how your LO's are getting on, how you cope etc

xx

 

[angelic000]

Hi,
I think there is a few of us on here. I don't come on here much hence late reply.
My son Freddie who has just turned 1 was also picked up by the heel prick test. Definitely was a big shock at the time. We went to the hospital the next day after being told so that they could confirm the diagnosis with a sweat test. But he was too small for them to get any sweat off him - but said they knew he had it (because of his gene type). He went straight on creon and the following week went on the same meds as Sophie (Fluclox, vit e and dalivit). He has grown one bug which was just a normal one and he went on Azithromycin. He has had a few colds but has never grown anything else on the cough swabs (touch wood) mind you the cough swabs are not that accurate. Weight wise he is going really well as he was on the 0.2nd percentile and now is above the 91st percentile. Personally I found the first 6 weeks really hard for a number of reasons. But now it is fine - I went back to work when he was 10 1/2 months and am lucky that it is family looking after him. The only area I used to struggle with was the physio and just trying to fit everything in. I have had a few home visits from the physio and now it just seems more manageable. I am thinking of trying for a 2nd child but am not sure what to do for best. I don't want Freddie to be an only child but not sure how I would cope if I had 2 children with CF. Lovely to meet you and here that Sophie is doing so well . Please feel free to PM me if you want to chat/ask anything.

Izzie x