DEAR DR. KIM 
DEAR DR. KIM
Dr. Kim Blake, paediatrician is one of the leading researchers in CHARGE syndrome, and has been working with children who have CHARGE syndrome for about twenty years.
1. Peter is a seventeen-year-old adolescent with CHARGE syndrome who has recently started testosterone injections. The teachers have some concerns that these are causing an increase with behavioral problems. He has been sent home form school as a result of his behaviors.
Should Peter stop testosterone? If Peter does not develop secondary sexual characteristics what are the concerns for him for later life.
Thank you for your question. Peter, like many adolescents with CHARGE Syndrome, needs hormone replacement to continue with a normal puberty and development. Sometimes the testosterone injections can give very high levels of the hormone causing probles and a lower dosage given orally may give better results. I consulted with Jeremy Kirk from the UK and he suggests starting at a lower dose than one would normally and use an oral preparation and working up slowly. As we all know too well most adolescents will have their ups and downs where behavior and moods are concerned. Peter will experience this and it will be difficult to determine if this is a "normal" adolescent issue, the injections, or CHARGE specific behaviors. The problem is unless Peter receives testosterone he will be susceptible to osteoporosis and cardiovascular problems in later life. It also really depends on how Peter sees himself. If he is aware of his appearance, likes new clothes, is concerned about how he looks and so on then there is a very severe psychological disservice that we will do if we do not offer the replacement male hormones. I emphasize replacement because this is not a medication in the strictest terms; it is 'putting back' a hormone that Peter's body should really have in the first place.
I understand how difficult this can be and taking the leap and stopping and starting will be frustrating for everyone. I suggest trying a lower dosage and going slowly from there. Work on the behaviors at school and home, keep diaries as to the types of situations that set Peter going and try and see if there is a pattern. Sometimes we are ready to blame the medications or the adolescent and it is the environment that is the problem.
Dr Kim