My daughter has a active AVM which we were told is inoperatable.
She has always be a sporting and active girl .
She plays hockey which the dr. said is ok.I only worry about her getting hurt or a ball to the head.
Also she is in a crucial school year Gr.11, after she had her bleed , had difficulty concentrating at school and studying.
Are supplements ok ...doctor didn't give me a clear answer on this and said a multi vitamin is fine but you also get brain boosters and Omegas which help with neurotransmitters etc...but they might not be safe .
I do want to help her with the concentration issues but not if its a risk.
Wendy, only your daughter's medical team can give the okay on supplements. That is not something we can approve. It's the same with the sports question. We cannot know what risks there may or may not be for your daughter with an inoperable avm. Members can say only which activities they personally engage in. Since you have concerns, a second medical opinion may be warranted.
Madere thank you for your reply.
Yes I understand this and they said it was fine for my daughter to play hockey.
I was asking if in anyone’s experience or opinion , it was dangerous to be playing sports.
Also the doctors I spoke with were very vague when I asked about supplements.
In fact I have found the general approach and information around AVM I was given all very vague . I found most of the answers to my concerns and questions on Google.
I certainly wouldn’t take medical advice from members without a medial doctors advice.
Supplements may depend on the specific supplements you want her to take. Show him the supplements and you might get a clearer answer. My son has takes a multi.
As to sport, my own experience only, there are no absolutes but his AVM is deep-brain so is quite protected from impact. The neurologist said he could fall out of a second story building and that he might die but that the AVM would probably still be intact. He's 8 now and has an inoperable high-risk complex deep-brain AVM. He plays football, cricket, soccer and whatever else he wants.
Thank you Christine. I appreciate your reply. My daughters doctor also said her AVM was deep rooted and very high risk to operate. It makes me feel better knowing what your doctor had to say.
As for the supplements , I’ve decided to refrain from giving her any for now. Best not to take any chances. With her next check up I will take them along and see what he has to say.
Many thanks again.
You're welcome Wendy. And I think it's very wise of you to take the supplements and ask any further questions about anything you need to to be confident that you are not putting your daughter at risk.
Please don't think that I presume to know where your thinking is but if it's ok I'd like to let you know my thinking on all this at the time Jack was diagnosed when he was 5 as it may help you.
I sat down and compiled a list of questions in regards to risk in Jack's case. I asked about blood pressure (as he has anxiety), hanging upside down (he's a little kid after all), airline travel and other things that I thought could possibly have an impact. The Neurologist and his Neurosurgeon both said that in Jack's case there was nothing that he could do that would cause a rupture nor anything that could be done to prevent one. It is just something that would happen when it happened. Radiation has been done but that will take time to work.
I sat down again and thought about my son's life, what I would want for him and what he would want for himself. I thought about life versus living. I realised that while I might worry less if I put restrictions on his activities I would miss the joy of seeing him smile and laugh as he played with his friends and what that would do to him. I found it a bit difficult at first but I got past that. I don't know what's ahead for him but for now I am taking pleasure in watching him live and enjoy his life. Going about the business of being a little boy. In my case and in his it was the best that I could do for him.