Jen,
I have issues with a doctor saying that a person with 2 CF genes is a "complex carrier." We had to explain to our family that our child was given a genetic diagnosis of CF and not a clinical diagnosis, which means there is the possibility that she will develop classic CF symptoms (based on her combo and those on the site with the combo, it will happen at some point, we hope not, but it seems that it is enevitable).
This means that we will continue to do preventative care as if she were going to have symptoms at any time versus just going with a "carrier" mentality. We had well-meaning family tell other family that our daughter was going to be "just like a carrier." This started a heated debate within our family and claiming that we wanted our daughter to be sick otherwise we wouldn't be making a big deal since she is "just a carrier."
We were met with comments like the Clinic is out to make money and if she isn't sick it isn't really necessary. This hurt. I would suggest that you do what you need to do for your child that will ease your conscious. If you feel that you can trust your doctor's opinion (is he/she a geneticist or a CF specialist?) and based on his opinion create a care plan for your child that you can live with, you've done all you can to protect your child from this horrible disease.
I'm sorry I'm so impassioned about this, I just know that CF is a mystery in many cases when there are genes that haven't been fully researched and that are extremely rare. You just need to ultimately do what you need to do so that you feel like you are giving your child the best opportunity to thrive.
Heather has more experience than she wants in this area. She'd be a wonderful resource.
I guess the ultimate moral to my story is be careful who you tell the whole "complex carrier" diagnosis to. They may not understand why you may decide to seek regular preventative care.
Em
I have issues with a doctor saying that a person with 2 CF genes is a "complex carrier." We had to explain to our family that our child was given a genetic diagnosis of CF and not a clinical diagnosis, which means there is the possibility that she will develop classic CF symptoms (based on her combo and those on the site with the combo, it will happen at some point, we hope not, but it seems that it is enevitable).
This means that we will continue to do preventative care as if she were going to have symptoms at any time versus just going with a "carrier" mentality. We had well-meaning family tell other family that our daughter was going to be "just like a carrier." This started a heated debate within our family and claiming that we wanted our daughter to be sick otherwise we wouldn't be making a big deal since she is "just a carrier."
We were met with comments like the Clinic is out to make money and if she isn't sick it isn't really necessary. This hurt. I would suggest that you do what you need to do for your child that will ease your conscious. If you feel that you can trust your doctor's opinion (is he/she a geneticist or a CF specialist?) and based on his opinion create a care plan for your child that you can live with, you've done all you can to protect your child from this horrible disease.
I'm sorry I'm so impassioned about this, I just know that CF is a mystery in many cases when there are genes that haven't been fully researched and that are extremely rare. You just need to ultimately do what you need to do so that you feel like you are giving your child the best opportunity to thrive.
Heather has more experience than she wants in this area. She'd be a wonderful resource.
I guess the ultimate moral to my story is be careful who you tell the whole "complex carrier" diagnosis to. They may not understand why you may decide to seek regular preventative care.
Em