I am pretty new to this world of AVMS but I have read about everything I can about HHT in the last month!! I was diagnosed with an AVM of the lung, which when they are in the lung its about a 70-90% (the actual percentage varies A LOT from source to source, but everything i have read & each doc ive talked to all said when an avm is in the lung chances are its because of HHT. This freaked me out, and I am still holding hope that I am in the minority and do not have HHT, as I have 3 small kids, and the chance to pass that gene onto each child is 50%. I have yet to see a genetics doctor, but in the process of getting that appointment because my kids pedi wants a diagnosis from me before she puts the kids through any screening, but the idea they have this "time bomb" on their body just kills me.
Anyway, sorry to ramble so much there... but from my understanding with HHT 2 of the biggest concerns are of course AVMS in the brain (which you already know your daughter has and I am assuming that is being cared for, and the other is AVM of the lung which carries dangers... I read that as long as those 2 things are monitored, you should be okay. Of course theres other things also associated with HHT but they arent the "time bombs" as the brain & Lung AVMs are. so as far as worry with your daughter you are already taking care of at least 1 of the biggest 1 dangers of HHT (the brain AVM) and also, a lot of people with HHT only have nosebleeds! That gave me a little comfort knowing HHT isnt always such a threatening thing! Being aware you have it, is some of the battle!
I wish you and your family the best of luck, I know how scared you are, as I am in a similar boat :(
Keep us updated!