Hi!

I also have a smallish 2 year old SWCAH daughter. Since she was 9 months she’s been below the 10th percentile for weight and around the 20th for height. We’ve been doing bloodwork every 3 months and keep decreasing her dosage (she’s currently on 1.6mg cortef 3xday and half a tablet of flourinef 1xday)

   What I don’t get is even tho her bloodwork keeps coming back saying she’s oversuppressed, she doesn’t have any of the other symptoms of oversuppression (moonface, weight gain, excessive appetite, etc.) You kinda seem to be in the same boat we are, only much more extreme! Does your son have any other signs of oversuppression? Does your son’s docs attribute his lack of growth completely to oversuppression or are they looking at other factors? My doc has yet to give me a satisfactory answer as to why her labwork keeps coming back as severely oversuppressed (and we always pull blood first thing in the morning before her first set of meds when her 17 OHP lvls should be highest) and it’s horribly frustrating.

   Also, is your son on cortef pills or compounded hydrocortisone? I know the compound is really hard to make and our endo makes us order it from a special compounding pharmacy that he trusts completely. He said that some of the local pharmacies that will do compounds doesn’t do the hydro suspension ’up to snuff’- meaning you think may be the correct dosage may contain way too much or too little of the hydrocortisone.

   Ha- I seem to be rambling today. Hope this helps and makes you feel better about your son’s dosages!

Martha