Hi, I’m just looking for a little input or guidance on handling restrictions in the school setting. Mostly regarding safety with sports, recess, gym etc. My son has been ordered for no contact sports, which is the easy part, but what about recess, gym?? I don’t want to make his life any more abnormal then its already been, but at the same time, want him to be safe!
Hi, My JoJo, did you ever get more input on the DVA vs. AVM question? Member Pongladi had this issue come up; you may want to check our her discussions.
As to restrictions, Tina White is a good person to talk to about restrictions. You can use the search box to look her up.
Thank you Dancer mom for your info!! Andyes, iI have found a wiwonderful neurologist, who has given us a lot of info regarding the DVA vs AVM. Apparently, there is more and more research suggesting that these large DVA’s can possibly lead to an AVM. So they are going to scan him every year at least through childhood to monitor for any changes. And especially with his particular case, because firstly, he has what they are saying is the largest DVA they’ve ever seen in a child, and secondly because these DVA’s are very typically asymptotic, but his is certainly not. But I feel that we are in good hands. And also, his neurologist is going to be sending us to Mass General in Boston to meet with someone there to look at all his scans, who has even more experience with DVA’s.
Again, thank you for your info!
Do you know if there is any specific group or site related to this topic? I kind of feel like I’m not sure if I still " count " in the AVM support group…
It is fine for you to keep posting and asking questions in the AVM group. We have had a fair few members who turned out to have other types of vascular anomalies. You are still very welcome here. I'm glad your neurologist is on top of things. :)
I'm sorry I don't know your whole story to talk specifically, but maybe talking about my son's experience will give you ideas of how we managed his situation. Brett had an AVM rupture a yr ago with embolization and surgery to remove it. Five weeks later he developed an infection at the wound and they removed the bone flap. He wore a soft helmet for four months until his surgery in Nov to cover the area with ribs. During the time when he was wearing the helmet, he had no physical activity beyond walking. In retrospect I wish we did more walks in the park etc. as he lost a lot of physical strength from the lack of exercise. He gained weight and stamina decreased. He spent recess and PE helping in the office or library and was allowed to choose one friend to assist him. After his last surgery he was cleared to begin physical activity, but no contact sports ever. No football, soccer, but they said yes to baseball and basketball (questionable). He participates in PE and recess. We did A LOT of education with the kids in the 5th grade and sent info. to all the other classes so everyone would understand his limits. We recently celebrated his one year anniversary with AVM Cupcake Day (education and remembrance). In baseball he is wearing a pitching helmet when on the field. It is such a fine line between protecting and letting him go on with his life. Both our neurosurgeon and plastic surgeon say he is safe to be physically involved. I don't know if any of this is relevant to your situation, but maybe you can get ideas from it.
Thank u so much Brett’s mom for sharing that story and for that information! And yes, although our situations are different, it does help. My neurologist has told us Absolutely NO to soccer, football, basketball…they are considering softball and possibly soccer with a helmet. But we never really talked about recess and gym…so I have a meeting at the school this week, and supposed to hear from the Neuro today regarding his thoughts.
Jojo’s situation is different in that supposedly what was originally diagnosed as an AVM in his frontal lobe ( we actually came within hours of surgical removal) , when an angiogram then showed it is actually not in the arteries, therefore it is no longer considered an AVM but rather a venous anomaly aka DVA. But apparently, this still carries some risk of rupture, as well as clot. Thus the restrictions… but you are so right! It is such a fine line between wanting to keep them safe, but at the same time wanting them to have some sense of normalcy!
Thanks again for your info!
My JoJo,
How did your meeting go at school? I hope your have a plan that is giving you some comfort.