Hi there,
I would be concerned too, probably negative isn't a good enough answer.
CF is a very serious illness, and they should not be playing with your sons life with probably's or maybe's. You need a definate answer.
There is no way you can develop CF, it is always there, in your gene's.
The test when he was born may have just been a guthrie heel prick test, which are now given too all new-born babies now (in the UK anyway, not sure about
elsewere.) I remember reading somewhere, they are about
95% accurate, but can give false results.
Nothing more can be done I don't believe, other than just outright demanding that your son is tested, and if your paediatrician won't do it, then you're going too have too find one that will. A sweat test usually gives accurate results.
Also a genetic test will be much more accurate now than 5 year's ago, as they can test for a lots more mutations now.
Obviously there are a lot of symptoms too CF, and your son might not have it, as it could just be a few other illnesses put together. But, it's defintely better too be on the safe side. Unfortunately demanding you are taken seriously is the only way. It's horrible that it has too be like that though.
Keep us updated with how things are going, and in the mean time, I will try and find out if there is anything extra you can do too get your son tested.
Gem
XxXXxX
Co-moderator in the: Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Currently it is Saturday, December 15, 2018 10:11 AM (GMT -7)
There are a total of 3,027,559 posts in 331,114 threads.
View Active Topics