The more familiar term (though I don't know if even this term could be dubbed "familiar") referring to this issue is neurological channelopathies. These links explain a bit.
One other thing the neurologist mentioned Monday- it's useless and not helpful at all to look at the parents and try to figure out who it's coming from. After reading the second link, I understand why.
Another Dr appt this morning brought more frustration and stress. I was told that Jace needs a full heart and blood workup done as soon as possible, because it sounds "very much like mini strokes," and "this isn't inconsistency, this is regression." I was also told that I must go ahead and get him in to the specialist they suggested before over the balance issues. Then before I even got out of town, I got a call from their geneticist who also added his own expression of the need for testing right away. He also suggested a new MRI. So I have an appt to obtain all the referrals needed- hopefully. And we will go from there. I am honestly scared for Jace now. And a bit stunned- okay, more like in shock. This was completely unexpected.
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