Hi and welcome!
Sorry to hear about your daughter... must be very stressful. In addition, I can't think of one single person with that diagnosis, and I've been here more than 10 years now.
What I mean is that I don't think you are going to find your answers here.
I will copy your message and send it to Dr. Linda and see if she can think of anyone who could help provide you support. She has a mind like a bear trap for that stuff!!