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It amazes me how so many people seem to just stumble upon this diagnosis. I read somewhere that most pediatricians see betwen 10-15,000 patients in a lifetime and because this is about a 1 in 20,000 chance of having it, the typical pediatrician never even sees a case!!! So, it is obvious why it doesn't jump to the forefront when presented with mild symptoms. In fact, our ped. was going to take a wait and see approach with my son on the premature pubic hair until I also told him about his height concerning me also. He said yes, your right, let's do a bone-age and the rest all then followed. He came back to me after the ACTH and diagnosis from endo by saying, I totally missed this - you are the one that caught this!!! So, in my opinion, a mother knows her kid best and if we feel something is not right then we are probably correct!!!
With the frustration you have had, I encourage you to fully pursue the NIH study. Don't be shy to chase down Carol by calling her - remember, the squeaky wheel gets the grease! and we have to be our kids best advocate cuz' nobody else will do it for us. Good Luck and let's keep in touch.
