Hi Carol,

The fact that your grandson's bone age is 9, with a chronological age of 5, changes the picture a bit.  As I said, when I looked at his height on the growth charts, I was surprised how tall he was for a 5 yo, when what you were worried about was slow growth.  Now that you have confirmed that he has had a history of undersuppression, as I thought might have been the case, it makes things a bit more complicated.  Especially since the bone age is as advanced, as it is.

Has your grandson's ped. endo ever mentioned that there was a growth problem before this, or only in the last five months, when the growth stopped completely?  If not, then he/she is worried about the right issue, but for the wrong reason.  Concerns should have been raised long before this, even while your grandson was growing "nicely."  Unfortunately, he was not really growing "nicely," he was growing way too fast and his accelerated growth is a much bigger problem than a (hopefully) temporary slowdown in growth, caused by oversuppression.

I don't mean to sound cryptic, but it would take pages and pages to properly discuss the complicated issue of too fast vs. too slow growth.  I think the best advice that I could give you, at this point, is that IF the ped. endo only became worried, in the last 5 months since growth has stopped and has never mentioned growth issues before now, then it is probably best that you switch ped. endos. I am sorry, but from what you have described, it sounds like the doctor has not had a good handle on your grandson's control from the very beginning, and he continues to provide sub-optimal care.  He is also not giving your daughter the full story of what is happening, and I would try to find someone who is more forthcoming, and better at CAH management, as soon as possible. I am certain you can do better.  In what part of the country are you located? 

Another question: you mentioned your grandson taking 0.5 mg. of florinef per day?  From my understanding, florinef comes in 0.1 mg. size tablets.  Do you mean that he is taking 5 of those tablets a day, for a total of 0.5 mg?  Or is it possible there is a decimal point out of place, and he is taking 1/2 a tablet a day, or 0.05 mg?  Amount of florinef taken and sodium balance can also affect control and growth, and since there is a big difference between 5 florinef tablets vs. 1/2 a florinef tablet, I would also try to clarify that issue.  One scenario would mean probably way too much florinef (possibly also contributing to slow growth).  The other would mean too little florinef ( which would contribute to poor biochemical control, and the necessity of using too high doses of glucocorticoids, which would also slow down growth.)