Welcome, @iamom It doesn’t appear that @victorarrow has been active since originally posting their comment in 2021. But they may still get a notification in their email if they are still signed into the forum.

However, there are other members here who have LV. So hopefully they can share their experiences for what has helped them.

I’m so sorry to hear about your daughter and her 7 years of trying to work through this! As a mother this has to leave you feeling so helpless and frustrated for her.

Is she being seen at a larger teaching/research hospital such as a university?