Hi Lisa,

I have a SVCAH daughter who is 2 weeks shy of having first birthday. We also are concerned about her weight. We went to Endo last week and she is in the 15th percentile for weight and 25th for height.

She was on hydrocortisone- 1ml -3times a day. We switched to 2.5 mg cortef 3 times a day when her 17ohp jumped from 901 to 6500 in 1 month!!! She is now somewhat oversuppressed with 17ohp now being 230, which my endo is happy with CAH kids staying under 1000.

At last check she had only gained 4oz in 3 months....now weighing 19.7 pds. She still drinks 5 fomula bottles a day...but will only drink max 5oz at  a time. I try meals and snacks, she does eat some, but not NEAR enough to take her off formula as I did my other non Cah daughters at 1 year.

Endo not too worried unless she falls off the growth curve, in which we will discuss decreasing cortef and possibly adding florinef, although she is not classified as salt waster (I believe all cah kids are slight salt waster...my own opinion).

Email me if you would like-

Lesly