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Cystic firbosis

1 reply

Vikki1993 · 10/03/2019 10:19

Hi everyone, my daughter whose 5 is currently being tested for C.F. At kings college in London as well as many other things (liver etc). She has a blood dissorder (hereditary sphereocytosis) and gallstones which we found out last week. We have another appointment at Kings in 6 weeks for results from her blood tests and mri . I'm currently pooping myself with the results as she always has a chest infection of some kind. It all kicked off in Sept 18 when she was admitted to hospital with a lung abcess and seems to have snowballed with one thing after another. Has anyone got any experience with CF? And could hopefully put my mind at ease.

OP posts:
NK346f2849X127d8bca260 · 11/03/2019 18:24

Two years ago we were going through the same paediatrician was convinced my son had CF and we were sent to Brompton, he has had chest infections, sinus issues, very poor weight gain, from toddler stage, they also diagnosed him with ABPA.
After a barrage of tests, he had extended genotyping, one CF mutation was found, his sweat tests came back intermediate, they have diagnosed him as a CF carrier but can’t say he definitely hasn’t got cystic fibrosis so they just treat the infections and they have put him on high calorie drinks.

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