So I spent about 2 hours on the phone today going back and forth with the pharmacist, the nurse from the local children's hospital who will be coming out 3 times a week, and the nurse from our neurologist's office to get everything squared away. We are set to start ACTH next week. Actually as early as Monday but I think we will start Wednesday night. I feel for Brandon who will have to give Sophie the majority of the shots (the visiting nurse will give it when she is here). I am just not strong enough to do it. There will actually be a 4 week period when Sophie will have to get 2 injections a day. She will be on ACTH for a total of 9 weeks.
I pray that ACTH works quickly and that we never have to go on the highest dose.