Trying to figure this kid out...

So we've been to the neurologist's and the pedi's and the neurologist said her "seizures" were neurological but not true seizures. I didn't understand that at all. So I asked the pedi and he said "neuro" doesn't necessarily mean it starts in her brain. He said, based on what was sent to him, he'd call it "neuromuscular myclonus". Ok, so that makes a BIT more sense. I'm still not convinced it's not starting in her brain. I don't know why it doesn't show on an EEG, but something has to be causing the eye twitching, the blank stare, the post-seizure zombie thing she does afterwards. Why seizure meds and diastat seem to help. Why her whole autonomic system goes flooey. How does all of that makes sense if this is just muscle spasms?

Ok, but say they ARE just muscle spasms. Why are they so severe? Why to these epsiodes last so long? Why do they progress and continue to get worse? Why do we have to knock her unconscious to get them to completely stop?

We are now doing Valium 3 times a day and Ativan 3 times a day, sometimes 4. She's still having 1-2 hour to hour and a half long clusters every day. She needs more drugs but they are so concerned about suppressing her respiratory system. I can't wrap my head around it because her Valium dose is .1 mg and her diastat dose is 5 mg. That's 50 times more and it doesn't suppress her at all! Ok, so can we increase to .2? .3? Is that really going to hurt her? UGH.

We have an appointment with her pulm tomorrow and I'm going to ask him to call the neuro, pedi, SOMEONE and convince them she's not in danger of a small increase. They are also concerned that giving her too much will make her sleep all the time and not be able to just be a little kid. Well, Charlie's not sleeping. She actually dropped a nap! She's down to ONE nap a day! Just like any other 18 month old. So again, what's the problem? She's only sleeping 12-13 hours a day, which I think is good considering the cocktail she's on. An hour or two more is not going to cut into her "being a kid" time, especially if she replaces the 1-2 hours of violent jerking with sleep.

If anyone knows what the heck is going on with my kid, please tell me! None of her nurses have seen anything like it. They've seen myoclonic activity before, but not to this extent. The doctors are acting like it's not a big deal but her nurses are freaked out. It's not normal, even for a kid with her condition.

Which brings me to another point...why can't nurses handle this child? Seriously, you go to school, you learn all this stuff, you've been doing it for years....what is it about MY child that has you running for the hills? That's nurse number 3 that's taken off. Because she didn't like being left alone with her. Yeesh. Good thing Charlie didn't get a chance to get attached. They sent me home with Charlie barely even knowing how to deep suction her. No education on seizures. No idea what was going on with my kid. And I somehow managed to keep her alive and happy. Surely a trained nurse can do it too, right? I mean, she was with her for 3 1/2 hours! Adrian could probably handle Charlie for 3 1/2 hours! Well, maybe not quite (LOL), but he's not intimidated by her anyways. He can't effectively suction her, but he knows when she needs suctioned ya know? He can tell when she's in distress and he doesn't wring his hands going, "WhatdoIdo, whatdoIdo!?" He tells someone she needs suctioned! Ok, rant over!