Re: Re: Excellent points and few more questions that are bothering me.....
3/20/02 6:13 PM

Hi Laura,

I thought I would tell you what I learned about how each person reacts differently to CAH. First of all, it's all about the genes. There are psuedogenes that exsist in each of us. They can affect how the genes are expressed and to what degree. Then there is the gray area that Adina was talking about in her post (answer) to my question about her kids mutations. Every one person because of these psuedogenes can have the exact same, detectable, mutation but present differently. Hence, you have two SW with the same mutations but expressing differently their reactions.

As we all know, the way we administer the meds to our children is not perfect. It does not mimic the natural way their bodies would have made coritsone. So, with that said, we will always have periods of under and over suppression and unfortunately the 3 months intervals of blood work is one of the ways that we have to see how the levels are. I wish there would be a better way to dose the kids and I think that all those posts that were out there from Carole and Laura K and Val did have a point that dosing based on the body rhythm is a more accurate way to give our kids the medication. It will be interesting to see if at the CAH Consensus meeting, the doctors can come up with a good way to dose our kids mimicing their own rhythm.

Ok, I've rambled on long enough. I've got to go make dinner.

Sandra :)

Sandra
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