hey martha! can TOTALLY relate. yes, we have the exact same problem. my son is 15 months old (swcah) and is on almost the exact same dose. he weighs 25 lbs and takes 1.25mg/1.25mg/2.5mg cortef and .05 florinef per day. last 17ohp was only 32. we were on compounded liquid but switched to pill in sept of 2004. the NIH docs (who we see now) were very opposed to it. anyway, he is in the 20th percentile for height and 75th for weight----this is improved from 6 months ago and me and my husband are on the shorter end too, so growth is ok. in MY OPINION, i am ok with this for my son. we have switched the dose down in the past (got down to under 3mg per day of cortef at one time) and within 2 months saw a 17ohp of greater than 4000. he also happened to have a weird adrenal crisis type morning (very pale and lethargic) when he had a mild fever which had never happened before. not sure if it was related to the high 17ohp or not.  anyway, he is growing ok, not overly hungry, sleeps fine, not irritable, etc. so i am keeping it the way it is for now. the docs still say the 5mg/day dose is low for his height and weight (about 8 meters squared/kg/day) and to go lower is risky. hope this helps. just my experience with this. feel free to email if you have any ????s

louise