Well it took several weeks for the Neuro consult that amounted to nothing. She felt it was likely a migraine disorder, but has no experience with the kiddos conditions nor has much of her history. The kiddo hasnt ever had a migraine and it would seem if the lesions and such in her brain were due to migraines she would have had the migraines first or with. But obviously I do not know. So after a month of waiting they have referred her to a Ped Neuro. Could have just said that all along. From research my guess is it’s to do with EDS or suggesting different connective tissue disorders or a new thing related to EDS. VEDS was never ruled out (and left on the table by the Geneticist) and so I’m thinking we need to do that given there appears to be vessel involvement in her brain.
I am curious if anyone knows if the “relative sparring of brainstem and posterior focca” is another way to say scarring or lesions? I also haven’t clue how to find a Nuerologist with experience in EDS, POTS ETC… Ideally I’d like to take her and her history us to Seattle for Dr Byers opinion. Don’t believe that is possible with her insurance.