What does it feel like to have a seziure? I wish I knew. Last night sucked, huh? Every time you fell asleep, you had one and it woke you up – for hours on end. It seems like it has been a while since they were so bad. I can never figure out what happens when they get so out of control – sometimes I think it is cumulative and a delayed reaction to being so off schedule on Monday. But who knows? Sometimes I think there is no real answer so all my analyzing doesn’t really get us anywhere.
It makes me so sad when they screw with you like that though. It’s like a bad joke – just when you think that you are finally able to rest, there comes another. I keep thinking position will help but of course it doesn’t so I probably only annoy you more by moving you around.
I think we are doing a good thing getting you off the clobazam but you certainly are having more seizures. Selfishly, we all prefer that though to the super sedated way it makes you. Unfortunately you are the one whose opinion counts the most and we have to guess at what it is. I hope we are at least close. The gelastic seizures appear to be back – the ones that make you smile and almost giggle – it is really quite bittersweet because as much as I miss your smile I don’t really want to see it when you are having a seizure. At least it makes me think that they don’t hurt you though and hell, if it gives you some sort of pleasure then it can’t be all bad. Ethan really thinks you are laughing and it makes him feel good that you might be happy.
We are going to start a new med soon – I was hoping to hold out until after we made the next change in clobazam but maybe we will re-consider. It is up to you buddy – let me know however you can. If it means having a few more shitty nights, I’ll get the picture and we can start the vimpat sooner. Once again, you are the strongest boy I know.
Lots of love,