Any thoughts are insight would be greatly appreciated.

My 8 month old son’s weight percentile keeps dropping.  He weighed 8.5 lbs at birth.  At 6 months he was in the 50% percentile for weight and height.  He is still in the 50th percentile for height but has dropped to the 10th% for weight.  He weighed 17 lbs at 8 months.  He is on 3.75mg of cortef/day and 1 tab of florinef per day.  He is considered a borderline salt waster.  He is a very, very happy and energetic little guy.  I am still nursing him and he eats 3 meals/day.  He does not have a huge appetite but he seems to eat well to me.  He is not as interested in nursing as he used to be but still nurses about 5x per day.  He will not take a bottle and hates the taste of formula (when given in a cup).  His pediatrician is concerned about the weight and wants to see him again in a couple of weeks. 

His last 17ohp (last month) was only 70ng/dl so we decreased the cortef from 5.0mg/day to the 3.75.  He had been on 10mg of cortef/day for a long time, and was showing signs of oversuppression (huge cheeks, not sleeping well, no growth for six week period) but still had high 17ohp numbers.  Once we added the florinef his 17ohp’s plummeted so we keep lowering the cortef dose.

I have two daughters who were always in the 95% for wieght and height and my husband is 6’2 and I am 5’9 so small/underwieight babies do not run in our family. 

Anyone else have a CAH baby who was not gaining well??  Any thoughts on why this is happening related to CAH or not???    

Thanks...Lisa