We have been struggling with Ben's self hurt behavior (hitting his head on the floor and using his fist to hit his forehead) for a while and it has actually been affecting his ability to progress at school. Recently, it has gotten much worse. I've been warned from other CHARGE families and read posts on the CHARGE Listserv about the challenging behavior issues they face, but I had no idea the emotional tole these behaviors put on a family. I would honestly say the behavior issues are much more difficult than the medical issues of CHARGE. Seems that Ben responds best to ignoring the behavior, but for his safety and to avoid a repeat of the eye injury, we were told we had to stop the behavior. So we started putting arm restraints on him, putting him in bed and setting his visual timer for 3-minutes for a time-out. This only made matters worse to the point where he was self-hurting all the time with no improvements. He was actually getting more hits in doing this than he was from ignoring the behavior. So we are back to ignoring the behavior.
We are also going to the doctor to make sure nothing else is going on medically to cause the increase in bad behavior. A referral has also been put in for a helmet to keep him safe. And the doctor is going to discuss some medicine options that may make him less agitated.
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Katie is on a low dosage of Celexa, and that seems to help keep her anxiety level down. She still has some bad days once in a while, but nothing like two or three years ago. It took us a long time to find the right med, though--we probably tried four or five different ones at different dosages. Hope you find something that works for Ben. I agree that the behavior issues are WAY more difficult to deal with than the medical issues.
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