My 9 yr old daughter has had various episodes of headache and speech/movement difficulties since being diagnosed last year. She has started now to get more frequent and much more severe episodes which have excruciating pain blurred vision yellow and red lights and sensitivity to noise and light sounding like migraines. Is this part of the deal? Has anyone had same and had treatment for these symptoms. Her grade 5 AVM is I ruptured thankfully but I can’t watch her go through this ordeal every 10 days. Is there anyone who I can speak to?
Find a neuro who specializes in AVM treatment. It took me awhile to call and ask questions before we found one. Once we did we felt much more at ease with the quality of treatment. My daughter’s AVM was found after a continuous 6 month migraine that didn’t respond to medication. She was 17 & we were told that as a minor most migraine meds were not allowed to be used since studies are done on adults. I’ve since read of kids being prescribed adult meds in adjusted doses. We also found out that most otc meds increase bleed risk so she couldn’t take them either. Having migraines myself but being able to treat them, it was terrible to standby helpless while she dealt with hers. I hope your doctor can find a med for your daughter. The one thing all the docs told us was that they couldn’t determine if the migraines were caused by the AVM or not. They cautioned that after treatment she may have them the rest of her life so we shouldn’t get our hopes up. She had gamma and Onyx embo & then it still bled afterwards. Her migraines have lessened in strength & frequency but no one can say if that would’ve happed without the bleed. So much more research needs to be done on AVM as well as their connection to migraines.
Best wishes & prayers you find help for her! Keep us posted!
Definitely go and see a neurologist about this matter and get her checked out…God bless!