Tuesday 3 June 2014

Sulky chops

Oh did I say they weren't seizures, oh, hang on, no, they are most likely to be seizure related.

Huh?

Yeah, huh?

We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......

Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.

What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.

On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.

And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.

Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.

It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point. 

Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.

I want to alleviate the fear of death

The other day I caught up with the last Season of This is Us. It's been running for a while and is the story of three children and the o...