Wednesday, July 30, 2014

Owen Update {July 2014}

I talked to the neurology nurse today. Owen's EEG was pretty much the same as last time. That means that the diet increase hasn't helped the ESES. It also means that the zonisimide wean hasn't made anything worse, which is good. Because Owen is doing so well clinically and not having all the cognitive issues associated with ESES, the doctor wants to try increasing his Onfi before starting Diazepam treatment. The Diazepam treatments can have a pretty devastating effect on cognitive and motor issues themselves, so we're being cautious about starting them.
So, the current plan is to double the Onfi ( gearing up for another insurance battle here since Onfi is brand name and fairly new) and do another EEG in a month. The good news is that they were able to get all of the information needed at the last 2 hour EEG, so we are going to try that again instead of a 24 hour one. It's much easier to keep him occupied for 2 hours than for 24! This time we have a meeting scheduled with the doctor for immediately after the EEG, so we'll get results right away. It kind of feels like we're getting another months reprieve. I'm really not looking forward to the diazepam protocol, so maybe this will work and we won't have to go there yet.

1 comment:

  1. New Diet Taps into Pioneering Plan to Help Dieters Get Rid Of 12-23 Pounds in Only 21 Days!