more advice please

anonymous

New member
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
 
K

Kaitsmom

Guest
Well i do have to say that Childrens Hosp. treated my children very aggressivly, they started treating kait right away and waited for the results to come back ( Kait does have CF) when my third child was born, i was really upset because they wanted to treat her and i felt they were taking away my last bit of faith by doing so. it really upset me even though i knew the chances were great for CF, my baby does not have CF and she is not even a carrier. I am glad that the doctors care enough though.

P.S. my child that does not have CF did have a bowel obstruction at birth!! What a miracle

kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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