We were in exactly the same situation when my son was diagnosed at age 6, with a 13 year bone age, and unfortunately, the answer is yes, there has been irreparable damage because of the delay in diagnosis. In terms of growth, our children have definitely lost stature because of the late diagnosis. Generally, people are supposed to have a bone age (or hormonal age) roughly equivalent to that of chronological age so, for example, at the age of 6, one should have the bone age of a 6 yo. Linear growth (height) is generally completed by bone age 17, with about 95% of it complete by bone age 15 1/2. The long bones in the human skeleton are like two plates that grow closer and closer together. When the plates close, with no more space in between, no more height is attainable. Thus, a person can't keep getting endlessly taller as they get older---they'll generally stop growing completely by about age 17. A bone age xray basically shows how much space is left between the plates. The closer a child's bone age gets to maturity, the less time there is left to grow. Ped. endos. basically do height predictions based on a child's current height and their bone age at the time. By knowing how tall a child is at a given time, and what percentage of growth they have already completed (bone age), they can do a simple calculation that "predicts" how tall the child will be. For example, say a CAH child is 6, but has a bone age of 13. At bone age 13, that child is expected to have achieved about 85% (don't quote me on that, i'm just giving and example) of adult height. If the child is 4'-6" (54") at the time, s/he will have a predicted adult height of about 63.5" (or about 5'-3 1/2"). If that same child had been diagnosed a bit earlier, so that s/he had a younger bone age, his/her height prediction would have gone up because they would have completed a lesser percentage of their expected total growth. Keep in mind, however, that percentage of growth completed is based on statistical averages. Depending on chemical and genetic makeup, an individual child may grow more or less than what is mathematically predicted. With CAH, the overproduction of male hormones (androgens) in the adrenal glands is responsible for premature advancing of bone age. (Actually, I believe androgens are converted into estrogen, which is what is responsible for skeletal maturation. I think that is what the NIH study is all about, stopping accelerated bone age by preventing that conversion from happening. Again, don't quote me, but that is what I understood after reading a description of the study.) When treatment is started, androgen production slows down (assuming, of course, that the child is well controlled), thus bone age is also slowed. Delayed diagnosis, therefore, irreparably hurts our children because they can never regain the time that they've lost to premature accelerated growth. When our ped. endo. diagnosed my son, he told us he knew it was CAH, as soon as he saw his growth chart. Basically, my son had been growing at an accelerated rate since age 3. My son has always been tall, but what is significant about the growth chart is that it showed that every year, he was pulling farther and farther away from the pack. So, for example, if he was at 95%ile in height at age 3, he was at 100%ile at age 4, then 105%ile at age 5, 110%ile at age 6, etc., etc. If he had been tall, but stayed at roughly the same %ile rank every year, there probably wouldn't have been an issue. My feeling is that doctors don't like to openly criticize another professional, especially in this day and age when everyone is so lawsuit happy. Mine was the same way, but after we got to know him a bit better, it was pretty clear to us that, without coming right out and saying so, he felt that our pediatrician should have caught on to the abnormal growth pattern at least a couple of years earlier, which would have given my son at least four more years of growth. I am very conflicted about this because I really liked our pediatrician (the one who missed the boat) and was looking for reasons not to blame her for missing the warning signs of my son's accelerated growth (it's so rare, she's probably never seen this before; how can you blame her for missing something so unusual, etc., etc.) However, a doctor friend of ours (not a pediatrician) made a good point when he said that plotting a child's growth from year to year has to be more than a mere excersise for pediatricians. If they just plot the numbers on the graph, without bothering to look at the data analytically to see what it might be telling them, then there is no real point to keeping track, besides just for the fun of seeing how big a child is from year to year. I also happened to see a medical textbook recently that showed a growth chart depicting abnormal growth due to CAH. Visually, the graph was exactly like that of my son's. It was no consolation to know that his chart was a "textbook" example of abnormal accelerated growth. At the same time, it answered the question of whether or not the pediatrician should have caught on quite a while ago. I am sorry that this post is so long, or if I sound like I'm "lecturing," but it's an issue that is very close to our hearts, since my son is one of those whose late diagnosis will cost him quite a bit of adult height. Since his bone age was about twice that of his actual age at diagnosis, we keep thinking, if only he'd been diagnosed even a year earlier, it would have given him an extra TWO years to grow. Woulda, shoulda, coulda, right?