newborn cf

Hi, welcome to the healingwell forums,

I'm guessing the test at birth was the heel prick test? I'm not sure about the total accuracy of that one as it tests for a certain chemical in the blood. A positive result can indicate CF and that is what it usually mean but it can also be positive with other pancreatic diseases.

From memory the results generally take about 3-6 weeks to come back from a genetic blood test. Do you have a follow up appointment with the people who carried out the test? Was the second test a sweat test or a genetic blood test?

Sorry for all the questions, it's just there are several tests associated with testing for CF, though I don't know the timescale myself others might so it may be helpful knowing the type of test carried out.

Hope your baby is well otherwise.

Gemma

I agree, the worst thing is the unknown. Once you know either way you can get on with it. Until then you will be looking for symptoms and that is normal.

A lot of children with cf have no signs until they're at least toddlers. CF immune systems against popular belief are actually pretty nifty. Studies have been done that showed that we produce a lot more white blood cells than most normal people. My sister who doesn't have cf I swear is ill every other week with colds, tonsillitis etc. My brother and myself who do have cf hardley ever catch a cold. So high chances are it will just be a normal cold he's had and won't have been a big problem so try not to panic yourself with things like that (it's hard, I know, I am the biggest panicker).

A lot of the time cf can be seen early with bowel problems. The problems can be seen on ultrasound when still in the womb. Though not all mutations of cf present with any bowel problems so that isn't always the case.

Hope the appointment tomorrow goes well. I hope your son doesn't have cf, though just to take a good side from it it's been caught super early. The earlier cf is diagnosed the better.

Good luck

Hi shoni,

I just thought I'd check in and see how things are doing. Have you had any information from the tests yet?

I hope all is well

Gem