Dear Cathy,

     I imagine today that you’all watchin Thanksgiving day parades and fixing up the turkey.  : )I’m not a doctor or nurse and please don’t use anything that I’ve said or others to replace what your doctor is doing without consulting him.  

    I was born with Simple- Virilizing CAH back in 1970 and it’s also 11- hydroxylase deficiency whereas most people have 21 .  75% of people with Classical CAH have Salt Wasting and the other 15 % have Simple-Virilizing. And: ) EVEN more people have Late Onset CAH  but aren’t aware of it : ) this group http://www.caresfoundation.org along with this web site can offer great info for education and support.

   Your Kiddo’s Endo sounds awesome from what you’ve written! He is sharing the game plan with you and bringing up the DEX which from what I’ve read : ) Many adults with CAH and children have reported success with this member of the cortisone family.

    I’m sorry but I don’t know how long it will take to see if the pred works out. Maybe? Hope for a change by the next time for blood work?

    Some have reported success with something called Carcadian rhythm dosing which I think? is to make a long story short -  is dosing more to the natural body use? release? of cortiosne which helps reduce symptoms and thus better bloodwork. I really don’t know much about this except that some parents are really happy and write of success.

    I did take the pred a little later but not like they do and for me back in the 70’s it was more about getting to stay up late and watch Hogan’s Heros with my Dad and even today? I still take the cortisone( the Endo changed it to Hydrocortisone three years ago) around midnight.

    I’m pretty much thick as a brick and I hope the smart people will post and offer more info about the Carcadian rhythm and such ; ) I remember reading some posts where DEX really did the trick and the cool thing about CAH is that you can always go back and forth with the cortisones.

    As a kid, I got blood work every three to six months or something along those lines for taking 5mgs of pred/day but did take more in the teen years once because I decided not to take the pred (got sick and had other symptoms).But, I was Ok height wise and ended up near to what my actual height would of been and only had acne during the teen years.  So, that was back in the 70’s and these docs are doing good with medical knowledge about this condiiton and are always learning.

   Your Kid’s Endo sounds awesome and very flexable : ) to do what needs to be done to stop what is happening. What is neat about medical conditions is that the dosing isn’t written in stone and based on individual need. Your Kids endo is in the middle of his managed game plan but also has other cards up his sleeve if this one doesn’t pan out.

    I don’t know if the pred should be broken up into to time periods because it seems like this dosing is to get a very specific result- to stop these symptoms, find the right dose and get everything in control and then on to maintenance dosing which might be dosing twice a day depending on your kids situation.

    How does your child feel otherwise? Has enough energy and appetite? feels healthy except for having percocious puberty? because I have an uneducated guess that Docs take all that into consideration with our dosing also.

Best Wishes,

    Aimee