A.F.
Of course doing all this research is driving you crazy: you keep thinking 'that could happen to my child!' even the most rare outcome is going to do that in your mind. You need to talk to the doctor that diagnosed him, and get an firm opinion about what the next step should be. and when you talk to that doctor, have a list of questions ready: tell him/her that you really need to understand completely what is going on, because it is worrying you so much. Ask about the severity of your child's avm: ask about how many of these s/he's diagnosed and treated. is there a treatment recommended? are there other ways of dealing with this? what is the expected outcome? how often has this doctor treated such a patient? Is there, perhaps, a specialist that you ought to consult? What are good resources for you to research? are there support groups for parents of children with this condition? are there any special warning signs or symptoms that mean it's an emergency? or any that ought to be noted and brought up at the next check up?
And if you can't get to the doctor who made the diagnosis, go to your regular pediatrician, pour out your heart (they'll understand!) and ask them to help: to recommend where to go and who to talk to, and how to figure out what you need to do for your child.
I feel for your pain.
Also, try calling the Children's hospital, and ask if they have someone on staff that you could talk to to help sort through all your questions, perhaps a patients advocate.
