I'm so sorry you are having to go through this. I know how difficult the "rare" conditions are. I could not find info on one of my boys issues anywhere online, and still can't a year and a half later. I don't have experience with your particular issues, but our vets had all but given up on our baby (Alaskan Malamute, 9 months old at the time). They had tried everything and we almost lost him several times. The last visit he had with our traditional vet, he had a blood transfusion and they were preparing us to lose him. We had a wonderful girl here that put us in contact with DR. Dodds. She spoke with a holistic vet in our area, and even though he wasn't taking new patients, he took our boy. He has done things with Chinese herbs and homeopathic remedies that has turned him around and given him life. I used to think Holistic was hokey, but now I'm a believer. If you have a Holistic vet in your area, you may want to consider trying it. It can remedy issues where traditional veterinary treatment fails. Good luck to you and your girl
Just one thing, if you decide to give it a try, make sure you do some research on the vet you choose. You want someone who really knows what they're doing. And it isn't cheap, unfortunately.