We're back in the hospital ... this time for tests.
Lately, Manny has been having more and more of these "episodes". They're coming closer together, lasting longer and are much harder on him/us.
Tuesday we had a 20 minute EEG and it seemed to be normal with no seizure activity ... which is GREAT news. We then went to the Neurologist and he said that 2 genetic tests came back ... he doesn't have Canavan's or Alexander's. But he doesn't have a clue what Manny DOES have then. He is not acting the expected way.
So we left the Neuro scratching his head. (Usually a fingerprint that God is up to something in my experience.)
But then Tuesday night he had a bad episode. We were told to take him to the local ER and we did. They saw it weren't able to EEG him quickly enough. The ER doc called our Neuro and they agreed these must be seizures based on the way he behaves after. So they set up the 24 hour video EEG.
Wednesday, he had 2 episodes. (They're so scary and you just sit there completely helpless.) Kaley (age 10) says he looks like, "He is locked inside his own mind." I think that's a pretty apt description of the situation.
I sit in the hospital again and for the first time, I'm actually HOPING he has an episode. Seems strange to wish for. But if he's going to have them, we need to know what they are. We need to know if there are possible treatment options.
But you know how you go to the mechanic and your car stops making the noise? I'm hoping that doesn't happen today, that it's not a complete waste of time.