Panayiotopoulos Syndrome Diagnosis (Long)

I am so unbelievably frustrated by how long it takes to get the healthcare system moving. My dd is 6 and September 13th she had her first seizure. She has had 7 since then. It is hereditary, as I had seizures from 8 to 14. We got our diagnosis of PS last week. I found it and took it to the doctor. He had never heard of it before. For those of you who do not know, PS affects the autonomic functions, breathing, temperature regulation, gag reflex and vomiting. My daughter has all of these. Her oxygen level drops during a seizure, and postictal her temp fluctuates between 96.8 and 100.8. We live in Georgia, US and she is being seen at Child Neuro Associates. I like the doctor, but I can not get anyone to answer the *^*&^ phone. I need a doctor who understands PS. I need a pulse oximeter and oxygen on hand for her break through seizures. My primary care doctor can not prescribe them because he did not diagnose her. Is that the hypocratic oath? I thought it was first do no harm. What is the big deal about oxygen when her O2 is 76%? She is on Tegretol. She is still seizing, but not as bad. We are trying to get her MRI scheduled at Scottish Rite. I think if I can get her to Scottish Rite and get them engaged we will be on the right track. But first, I have to make sure she does not suffocate or aspirate. I will take any and all recommendations, suggestions, and prayer!