Anybody from Northeast? (August 2001)

To answer your questions: No, my son is not a SW. He was not diagnosed until he was 6 1/2, a little less than two years ago, and he has always been extremely energetic and physical. He is the type of child that will still want to go bowling with pneumonia and a 102 degree fever, and is outside throwing a football six hours after throwing up repeatedly with a stomach virus. He only seems to slow down when he is REALLY feeling bad so, in a way, I guess we are in the opposite situation as you.

There is such a wide range of "normal" that it is difficult to say what is okay and what is a cause for concern. Nick is probably at one end of the spectrum, in terms of energy level. I feel he also tends to be hyper-sensitive in his emotional reactions to things. But in trying to figure out if there is an issue of concern, I try to compare him only with what is normal for him. Usually, when he has not been himself, there really has been an underlying problem, at the root.

With that said, I do understand your concerns about your child's energy level, and the feeling that a 9 yo. boy should not be listless or tire easily. Has your son always been this way? Were there ever periods of time when his energy picked up and, if so, what was the circumstance---any medication, diet changes, etc? Has he had his red blood cell count or hemoglobin checked recently (for iron?) And, finally, what can your son tell you, himself, about how he feels?

My son is on liquid dexamethasone, not cortef, though we did try cortef for 3 months (shortly after diagnosis), and elected to switch back. His regimen on cortef was 2 pills/day---1- 5 mg. tablet in the morning, and another one at night, before bed, for a total of 10 mg/day---the same total dose as your son. Every child is different in their medication requirements, but I do know that that amount was not enough for my son (it has since been proven that his medication was miscalculated during this time.) The low total amount, coupled with the 2X/day dosing, threw his system into complete havoc.

I once gave my son an extra 5-mg pill in the middle of the afternoon, just to see what would happen---I was dubious, myself, that I would see a difference, but the change in him was actually shockingly dramatic. Believe it or not, he asked if I would go to school the following day, to give him an extra pill in the afternoon, because it made him feel so much better. Knowing that children don't normally ask for more medicine, it---along with my own observations---was an indication to me that something was wrong with the regimen that he was on. I am not trying to suggest that anything is amiss with your son, but it probably doesn't hurt to double-check that you've got all the bases covered, in terms of his total dose, timing of meds, etc. Especially if you are asking questions along these lines and thinking that you might be heading into a dosing problem---perhaps your "gut instinct" and intuition is trying to tell you something.

Also, you asked about problems with weight? Do you mean gaining or losing? Rapid weight gain (and "moon-face") is often a sign of too much medication. Weight loss could be a sign of too little medication. Has your son been having problems with either/both? I noticed that you said you also do urine collections---we do, too!---and I thought we were the only ones, except for another family on this mb who just recently started, as well. How have they worked out for you?

Yes, having a computer has really opened up a world of possibilities, in terms of accessing information. Prior to my son being diagnosed with CAH, I was rarely, if ever, online---what a difference two years make! Thank you for your nice words and vote of confidence---no, I am not in the medical profession (far from it.....I am a licensed architect!) Just compulsive, I guess!!