Hello Moya Moya family.  We have a 3 year old that has had the bilateral surgery when she was a year old.  We are now faced with the daily seizures and are having trouble finding a medicine to help her and also the developmental delay from the strokes.  We are going to be trying the hyperbaric oxygen therapy out and wanted to see if anyone else out there has tried this out or heard anything about it.  I have not heard of anyone with MoyaMoya use this typ of therapy but have heard of child stroke patients using it and it helping tremendously.  I would love to hear from you.  

Sorry to hear that you are having such frequent problems with seizures and am hopeful the oxygen treatment works.  

My son is almost three.  He had a left hemisphere stroke when he turned 2 and he had bilateral surgery six months ago.  He has not had frequent problems with seizures, but had one episode of "blank stare" which could have been a seizure and we have been reserved about treating him as though it was a seizure because of the side effects of the drugs.  The episode was 5 month ago, with no further episodes since so we're hopeful that there is nothing to worry about, but not sure there isn't.

Did your seizure episodes start post surgery and have they always been as frequent as daily or have they progressively worsened over time?