Hi
I posted before about my friends twins and how they have found C886 gene plus another in one. The tests were done when he was born as he didnt pass meconium for over 48 hrs. He has had 2 sweat tests, one which they said was borderline to positive(?), one which they said they were unsure of and yesterday they did another but then said they didnt collect enough sweat. They have ordered yet another to be done on March 9th but although he started on medication (but not enzymes) over 2 months ago, the paed is still telling my friend that it is not conclusive that he has CF. Does anyone know how that can be so of they have isolated two genes?
Also his twin brother who has had many symptoms and been hospitalised with pneumonia and bronchilitus and has deafness due to fluid in his sinuses, has not had any test results back yet and the paeds are saying that there is not need to worry nor do a sweat test as he has no DNA results back yet. My friend asked for him to have a sweat test done but they insist that they will not until the DNA results are back. He is asthma medication and an ENT clinic appointment has been booked but she has not got it through yet.
we are in the UK and where we live there are no CF clinics or doctors, just regular paediatricians who seem to know very little.
thanks
Jacqui
I posted before about my friends twins and how they have found C886 gene plus another in one. The tests were done when he was born as he didnt pass meconium for over 48 hrs. He has had 2 sweat tests, one which they said was borderline to positive(?), one which they said they were unsure of and yesterday they did another but then said they didnt collect enough sweat. They have ordered yet another to be done on March 9th but although he started on medication (but not enzymes) over 2 months ago, the paed is still telling my friend that it is not conclusive that he has CF. Does anyone know how that can be so of they have isolated two genes?
Also his twin brother who has had many symptoms and been hospitalised with pneumonia and bronchilitus and has deafness due to fluid in his sinuses, has not had any test results back yet and the paeds are saying that there is not need to worry nor do a sweat test as he has no DNA results back yet. My friend asked for him to have a sweat test done but they insist that they will not until the DNA results are back. He is asthma medication and an ENT clinic appointment has been booked but she has not got it through yet.
we are in the UK and where we live there are no CF clinics or doctors, just regular paediatricians who seem to know very little.
thanks
Jacqui