Yes, he has always looked at least 2 yrs older than he is!  Even when he was only 3 people would comment that he looked 5!  He is now almost 5 feet tall and about 110 pounds, but was up to 133 pounds when he took a medication for behavioral problems that caused a lot of weight gain, after stopping that med he lost over 20 pounds this past summer thank goodness.  He is always going to be a strong boy, has a huge head too...has been an adult sized head since age 5 and now at age 9 it is larger than mine! 

I would have remembered if they’d done that ACTH stimulation test, and they never did.  He has been seeing the same ped. endo since he was 6 and all they have done really is look at him physically and do some blood work, but mostly on the hormonal stuff like Testosterone and LH and such. 

I don’t understand how he can seem to have most of the signs of puberty, including erections, ejaculations, crushes on girls (sorry to be so descriptive!), penis and testicles getting larger, acne, constant growing (twice the rate of normal kid I am told by endo)...only things he doesn’t have are armpit hair and body odor!  but how can he have all these signs, yet supposedly his Testosterone and LH are not at a typical puberty level??  I was told his testosterone was 15 and his LH was .16 and he said it LH should be over .3 to be fully in puberty. 

Are the Lupron shots more painful than typical shots?  thanks for info.  I am a bit annoyed that no one has tested him for CAH yet.  And I probably should be tested too since i have been diagnosed with PCOS myself for years now...don’t know if it applies to this topic but I took a medication once that said about 1% can get low sodium problems and I did right away, was very sick and felt like an old lady, couldn’t think and was tired and dizzy a lot and mixing up my words.  My son gets dehydrated and over heated very easily.  But I guess from what I am reading if he had the salt form of CAH he’d have been really sick as a baby??  Not sure if that is always the case. 

This is so stressful.  Anyone who wants to email feel free!  I feel like I will burst with info before I can talk to his doc.  His endo has a way of downplaying things, so I have to make sure I stick to my guns and make him order the tests!  the ACTH test and a 17-OHP level are the most important right?  will someone have abnormal levels in both tests for sure if they have CAH?