Denise,

Cornell tested it for us. 

Yes, I am treated for LOCAH.  I take Cortef 5 mg tablets.  5 mg at 8:00 a.m., 5 mg at 2:00 p.m., and 10 mg at 8:00 p.m.  I just had my levels tested this week though because I’m suspecting I’m a tad over-suppressed.  I was having a frustrating two periods a month approximately 2 weeks apart for the past two years with the exception of being pregnant, and I had some cysts on my ovaries as well.  Our endocrinologist went to a conference somewhere in Europe and spoke with some other endocrinologists, and treating me was the solution they came up with.  Now that I have started treatment though, my periods have ceased, so I have asked him to see if my levels are way off now.   An hour after an ACTH test I scored in the upper 6,000’s for our endocrinologist.  I think he and I both were surprised.

For your third question, unfortunately no.  We were tested as a result of my daughter being born with very minor virilization of Prader level 2.  She is quite the apple of my eye.  We feel very blessed to have her, and so glad that she made it through a crisis after birth, and love her even more for what she’s been through.  I can never snuggle her enough, she’s daddy’s little princess too.  Had I been DNA tested during our 6 year fertility struggle (which produced two salt wasters) I would have taken dex during the pregnancy.  But, if Arizona would have had newborn screening at the time of Jake’s birth, 4 years ago then we already would have known, and could have prevented Savannah’s virilization.  Thanks to the efforts of parents and organizations like the CARES Foundation all AZ babies are now tested.  Now if we could just get all 50 states to realize the importance of newborn screening.  Every American baby deserves a fighting chance!  : )  They are so precious and so worth it.

Blessings,

Adina