Hi there and welcome,
I'm sorry for what you're going through. Any waiting and testing for CF must be so nerve racking as a parent. I can't imagine what it must be like.
New born screening isn't 100, I don't know the exact figures, but false results can occur. Depending on whether the test is done early or late enough I think it varies on each child as to when the test needs to be done. I can't explain it very well, as I've only read up on it once and am picking on bits I remember.
I think the new born test is done as it catches more children straight away. Though the test isn't the best. CF is best caught as early as possible and the sweat test doesn't work on newborn babies.
Hope this information helps you understand why the extra testing will need to be done on your son. I'm sorry it doesn't ease your worries though.
Hope everything works out ok
Moderator of 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, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Lofepramine, Slow-Sodium, Azithromycin, Ciprofloxacin, Omeprazole, Tobi Ineb, Fresubin Liquid Feed, Skandishakes. I use PEP device as my physio.
Had a Port-a-cath fitted on chest wall since Nov 05
Sometimes, I feel that I should go and play with the thunder - then I get scared and run away.