The same thing has been happening with my 17 month old son. When he was born his weight was on the 50% and his height was just above that. Both his weight and his height have dropped. He is close to 10% for weight now and he is no longer on the chart for height. His endo has reduced his meds. He is on such a low dose that his endo is afraid to lower it anymore (only on 3mg of hydorcortisone a day). His 17OHp has been dropping as well (it has been since birth). His endo is starting to wonder if he really does have CAH?
We go for genetic testing next week. Can’t wait! I know I will feel bad if it turns out that he doesn’t have it and we have been giving him steriods for 17 months. But I also think back to when he was having an adrenal crisis (or was it?)at 9 days old and I’m so thankful for the ped. who saved his life by treating him for adrenal crisis with steroids. He had all the signs of CAH, vomiting, dehydration, dark skin, and bloodwork results led him to a diagnosis of SWCAH. Anyway, very excited about our appointment next week. I will let you know how everything turns out.