I need some advice please.. Any parents of children with CF here?

[Evasmum12]

Hi all,
My DD does not have CF, she has been tested twice. However, every single Doctor, consultant, nurse, HV etc I have seen in the last 9 months has asked me "has she been tested?" then usually, when I say yes, "are you sure??"

A bit of background:
DD is ex prem, born at 28 weeks, and had no real issues apart from her weight.
She was never a good eater, and stayed between the 2nd and 4th centiles, but we got by until last November when she started getting chest infections, one after another, until Feb when she developed Pneumonia, she was in hospital on oxygen for 3 weeks, then another week until she was well enough to come home. She lost a lot of weight while in hospital and stopped eating completely. Since leaving hospital she has been ill almost constantly with chest infections and vomiting mucus up daily. She was NG fed from leaving hospital till June, but the vomiting and the mucus makes it so hard for her to put on weight. She will have a good few days and I start to think she could be getting better then within a few hours she is coughing again. In 8 months she has only spent a few days without being on antibiotics. She finished an 8 week course of antibiotics last wednesday and by monday I was back at the GP because she had another chest infection. They come on very suddenly and aggressively, usually overnight. She also is very prone to any bugs going round, ear infections, tonsillitus etc, usually on top of the chest infections.

Even now her nurses say she is like the CF children that they look after, but she definately hasn't got it, I was wondering if there are any conditions similar to CF or any parents who have been through similar to find out their child has a totally different diagnosis??

Of course I don't want her to have a serious condition, but as soon as the health professionals know she hasn't got CF they dismiss her. I feel like there must be something underlying and I can't get any consultant to look into it.

She is waiting to have a gastrostomy, and I'm scared that once that is in and she hopefully gains weight, they will be even less inclined to look into what could be wrong.

Does this all sound normal/abnormal? wwyd?

I know a friend with a cf child told me there are different variants of cf, and that the nhs only tests for the most common? Have you tried the cf trust for more info/advice?

Not a parent of a child with cf but i do know a bit. If your child has has a blood test it probably only checked for the most common mutation in the cf gene. There are other mutations in the same gene that give cf, some with more severe symptoms than others. If your child has had a chloride sweat test then that will cover all mutations in the cf gene.

Hi have you considered bronchiectasis ? Its similar to cf