My son (swcah) just turned one this month.  He is not on the chart in regard to weight and is only in the 5th percentile for height.  His labs always come back perfect and we have a very well respected endo from Johns Hopkins in Baltimore. 

Because of his lack of weight/height, we see a GI Nutritionist.  Our son isn’t a big eater...he never has been. So we’re trying to increase his calories.   We’ve had all kinds of other tests run to make sure nothing else was going on and everything came back normal/negative.  Our endo thinks this is a "pedi-type" issue and not a CAH issue.  She said that if he was over or under dosed, we’d see things like major weight or height gain. 

He also has a sensitive gag reflex so we just started to see a Occupational Therapist.  He’s getting much better with solid/chunky food, so I feel it’s only a matter of time before he starts to really grow again.  Everyone thinks it’s a caloric problem. 

Also, our son is always thirsty too.  We have a sippy cup for him wherever we go and it’s available to him all day.  He LOVES cold water.  We’re trying to replace it with cold Pediasure though...helping the weight issue.  :)

Seriously, I always thought that the CAH would be my biggest worry, but it’s my least concern right now.  I worry way more about him gaining weight!

Sue