Oh, boy, I can understand why you would be so concerned. To be going through this with a little one is so scary. However, I like what the new doc is doing. The meds are less evasive. I think that he is hopefully going the right way.
On another note, have you talked with your local school district about getting her into the system? She certainly would qualify for early intervention, and its possible that some of the time spent with other kids would be good for her (and you).
Cheesecake, you have a lot on your plate right now. I read through your profile and am amazed at how you keep putting one foot in front of the other.
I spent a couple minutes reading through RAI1 and Smith-Megenis, and it seems like many of the symptoms aren't related to RAI1?
(Is she diagnosed with Smith-Megenis?)
I'm always concerned when I see a child diagnosed with a disorder (in this case, RAI1) and then diagnosed with disorders that are symptoms of the original diagnosis. So you've got the original genetic diagnosis that is confirmed through a lab test, and then following, diagnosis for Autism, ADHD, insomnia, and central hypotonia.
I guess my concern is, when you have such a laundry list of different diagnoses, and there are individual and various treatments for those disorders that include in some cases things as simple as reducing anxiety, you can lose focus on what the root problem is.
Do you have a community of support with families of other individuals with RAI1? Are there specific doctors who treat that genetic abnormality? Otherwise it just seems like you have to try to treat all these disorders in kind of a scattershot way, instead of recognizing they are symptoms of this one disorder.
Best wishes. The PRISMS website you referenced seems very helpful and hopeful.