My son is almost 16 years old and has CHARGE syndrome. He has struggled with many of the same issues most of you have posted. We have just started him on growth hormone (genotropin) and are praying that it helps him go into puberty and also get some height and muscle tone. If anyone has experience with it, I would love to hear your feedback. I am also willing to share with any of you the processes we have gone through throughout his life. I can tell you that the outcomes have been much better than we have been told by the doctors as to his development. He is behind but functions very well mentally. I can specifically say though that EARLY intervention is sooo important. I know each child is different.