I can’t help you with the "looking for an adult with CAH" but as a parent, I can tell you our 5 year old son is in the same situation.

His levels have been fairly well controlled (although we have had periods of oversuppression). He has typically been on a low dose of Cortef (ave. around 9mg/m2/day). His height growth has been good, yet we have consistently struggled with his weight.  He is very active and our diet is pretty good - lots of fruits, veggies, whole foods and not too many sweets or processed foods.

He was always a chubby little guy. But when he was about 3 1/2 he started to gain weight very quickly. I think his preschool diet contributed to his issues. I no longer had control over everything he ate and even the once a day juice and sweet snacks seemed to really stick on him. His ped endo said that kids who are prone to being overweight often see a big weight gain around age four.

Last spring he gained 10 pounds in the three month period between endo visits. That was a real breaking point for me. I felt we had to try something different. We started circadian rhythm dosing (see the thread below for a good description from Julia). The results have been amazing. He has averaged 1-2 pounds gained each 3 months instead of 5-10. He is still growing well (2-3cm/3 months) and is on an even lower dose than last year. His moods have also smoothed out. For us, this has been a good dosing system.

My theory on why this dosing schedule works well for us - I think he metabolizes the cortef quickly and a 4x a day dose works best for him. Also, I think he really craves carbs and fatty foods about an hour after his dose. Because his largest dose is now at 3:30 am we don’t have to fight to keep him away from food. His next largest dose is at 7:30am and it is easier for me to get a healthy breakfast in him than it was to make sure he made healthy choices for lunch and snack.

If you would like to talk more. Feel free to email me