Sabril Update

At this point I don't think we can exactly say what is going on with the Sabril.  Yesterday, Charlie Claire only had one episode the entire day.  This is HUGE considering she typically has 20-30 a day.  Today Charlie Claire has had 6.  They have only lasted 1-2 minutes, a change from the 3-8 minute ones we typically see. In a perfect world it would seem as though the Sabril is showing signs of working however, we know we are far from a perfect world so it is still a bit early for us to get our hopes up. 

Dr. Morton started C on 3.2mL of Sabril twice a day.  You have to mix this medication up -- I kind of feel like I am back in Chemistry class. Tomorrow we are increasing the dose to 6.4mL twice a day and then 10mL twice a day in a few more days.  We are hoping we see results on the 6.4mL and could potentially stay at that dose instead of going up to 10 but we shall see.  This medicine has to be mixed with water so we can't give it to C in her formula.  We haven't had much luck in the past giving her medication out of a syringe but this one seems to be working well but it's a smaller dose.  Not so sure how it is going to go when we increase the dose tomorrow. 

The Sabril is doing 2 things to Charlie Claire right now:
1 - making her super sleepy -- it typically takes C a couple days to get used to a new med but with this one right as she is going to get used to it we are going to increase her dose. 
2 - the Sabril apparently works like a muscle relaxer.  The dr told me the other day that it might make her clumsy. I wondered to myself how you can tell if an infant is clumsy well let me tell you what...homegirl is like GUMBY! I swear she is like a limp little noodle.  Because of this we are changing the dose of her Klonopin to twice a day instead of 3 times a day to see if this helps with that (and of course her sleepiness).

As we have been weaning her off the steroids her mood the past couple of days seems to have been a little better!!! C still gets fussy from time to time but it has been a lot easier to calm her down.  She was in such a good mood yesterday we actually got some play time in! We haven't gotten in much physical therapy but hopefully as her mood improves we will start working on that.