Shannon,

I would do it. I live in Spain, and here it is covered by the government, so I cannot help you with costs.

 I have a 7 months old son diagnosed with SWCAH at 20 days. In our case, the DNA test led to question the diagnostic because the mutation they found on him was one of the "soft" types, meaning he could not be a salt waster. We are in the process of reducing the medication (he is out of the salt suplement, reduced Cortef by 40% and still keeps the florinef) to redo the tests again once he is out of the medicines. So far, he is doing great. The endo thinks that he might be have a softer version of CAH (non salt waster).

I’m not saying by any means that this can be your case, but just thought I should share with you, because of the significant implications it’s having for us.

Take care!