Hey I live in ga I was wondering if there was any children with the avm problem that want to do a support group with me. My daughter I think would do way better with this if she knew that she was not alone. Also she asks me a lot of questions. And I don't have the answers maybe someone here does. Once you have a rupture how long before you might have another one when your a kid? and how do you deal with the mood swings?
Katherine, you may wish to join our Southeast group: http://www.avmsurvivors.org/group/southeastavmsurvivors
I don't think we can predict the likelihood of another rupture or have any idea when it would or wouldn't happen.
Some of our members have been helped by antidepressants or anti-anxiety medication for mood swings. See: http://www.avmsurvivors.org/forum/topics/avm-and-mental-illness
There are also a couple of members whose emotional issues were caused by inflammation and were helped by minocycline.
Hi, Katherine - I'm not a kid but wanted to chime in - definitely look at the links dancermom sent you and if you're still interested in finding real live people for your daughter to meet try widening your search to include brain injury patients or trauma patients - try children's hospitals in your area or rehabilitation hospitals. I see a ton of kids at rehab when I go to NRH (Nat'l Rehab Hospital in DC) - it always makes me want to cry to see their tiny wheelchairs, but they're often just busy chatting away to friends and therapists so that you can forget the chair. Seeing them in a bunch like that reminds me that they're not alone. :) www.annninglearninghow.com