Dear Carol,

Your grandson has stopped growing because he is oversuppressed (taking too large doses of glucocorticoids).  I am sure of it.  It makes me sad that a doctor would suggest giving him another drug, to treat the symptoms, instead of taking steps to correct the root of the problem. 

Two of the most common side effects of too much steroid medication (in your grandson's case, hydrocortisone and prednisone) is slow down in growth and weight gain.  (Sound familiar?) Another common side effect is suppression of the immune system, i.e. inability to fight off infections.  (Again, sound familiar?)  In addition, glucocorticoids have the effect of raising blood sugar levels, so it is not surprising, either, that your grandson would be somewhat hyperactive.  So would the rest of us, I suppose, if we were constantly pumped up with sugar.  It makes me crazy that, with so much "evidence" staring him/her in the face, a doctor could miss the obvious. 

Prednisone is considered to be about 5 times more potent than HC, though that equivalency is based on treatment of an inflammation, rather than suppression of adrenal androgens.  It is my understanding that no studies have been done on the use of prednisone in CAH children, so it is quite possible that that equivalency is actually much greater than 5 to 1.  In addition, a dose taken at night is, effectively, much more potent than a dose taken during the day, because metabolism slows, so your grandson's nighttime dose of glucocorticoids is even larger than it would appear. 

The problem, I feel, is not just the total amount of medication that your grandson is getting, but also WHEN he is getting it.  To suppress adrenal androgens, it is often considered BEST to give the largest dose in the morning upon waking ~6-7 AM, or so.  That is because ACTH levels peak at around 8 AM.  Your grandson's dosing regime does just the opposite, i.e. a smallish dose in the morning (2.5 mg. HC), and a GIGANTIC dose at night (equivalent to at least 12.5 mg. HC on T, Th, S, S; and at least 15.0 mg. HC on M, W, F.)  It's really the worst of all possible worlds, when talking about avoiding the side effects of glucocorticoid medication (such as poor growth and weight gain.)  Therein, I feel, is the root of your problem.  I would certainly start by trying to correct the problem, at hand, rather than continue to entertain thoughts of growth hormone. 

One last though, which is that, in looking at your grandson's height and weight on the growth charts, I was surprised at how tall he is for his age.  Proportionately, he IS much heavier than he is tall, but I was surprised to see that he is growing at about the 95% ile line for a 5 year old.  For a salt-wasting CAH patient, that is really rather remarkable, and it tells me that he has possibly had problems with control and accelerated growth in the past?  If that is true, and the prednisone was added in order to bring him under control,  I would also question whether or not he needs these large doses of glucocorticoids to return "good numbers" simply because he is not taking enough florinef.  You might want to ask his doctor about that, too. 

Tell your daughter that things should look up, once some changes to your grandson's present medication are made. If the doses are pared down and redistributed, his growth should pick up again and he will slim down.  One last question: Do you know what your grandson's bone age is?