So, we went to see the neurologist and I must say I was impressed—and that can be pretty hard to do when it comes to providing services for my kids. This is not to say, however, that I was pleased.
Getting there involved a lot of anxiety on Will’s part and none too little on mine, though for different reasons. (I’m not so good with going places I’ve never been before.) When the neurologist came in, the first thing out of Will’s mouth was “What language are you speaking?” To which the neurologist replied good-humoredly, “English,” in a rather pronounced Asian accent. I admit I cringed with that one.
His accent, however, did not impede our ability to communicate with one another, and the appointment proceeded at a rather rapid pace, with me providing information that was (for the most part) already in the questionnaire that I’d filled out, which he didn’t take until the end of the appointment.
The sum result of the visit is that he can’t diagnose Will yet. This is where the disappointment comes in. However, the reason is because he doesn’t have enough hard data, which is what impressed me. I guess I’ve just spent too much time listening to psychologists, for whom behavioral data is THE data, so I’m not used to actually needing conclusive tests.
And so the long story short is that the first EEG was not conclusive. The neurologist is not satisfied that epilepsy has been ruled out, though he did talk about the possibility of “frontal lobe seizures” without explaining the implications—he wants to know what we’re dealing with before he leads me down any rabbit holes (my phrasing, not his).
So, we’re going back tomorrow to have a video EEG which may require an overnight stay. The goal, once again, is to actually record a seizure event and we’re going to stay until we do even if it means staying overnight, which Will and I would rather not do for a whole host of reasons.
Wish us luck!
Oh Stephanie! Sending hugs and good thoughts..The waiting is awful..I hope it goes quickly..you get the results that you need AND a direct course of action!!! Hang in there.
It sounds weird, but if Willy is having seizures I sure do hope he has one while being monitored! Not knowing is so annoying. Prayers going out for you guys!
Thank you both. I’ll be posting about the experience over the next two weeks, but yes we did get a course of action (and it’s working!) and he did have seizures while we were there and while he was hooked up to the EEG. So, it was exhausting and totally devoid of fun, but it was successful.