Tuesday, August 2, 2011

So Long, Sabril!

Our doctor called today.  She and her boss agree that the Sabril should be stopped.  I cannot describe how relieved I was to hear those words!  I felt that it needed to be discontinued, but it really put my mind at ease to know that the doctors agree with me.  So the plan is to continue the Clonazepam twice a day, which helps him sleep, but does not cause him to be dazed and "drugged".  He's taken this medicine before as needed, so he's used to it.  We will also increase the Phenobarbital from 7mls once a day to 8mls this week, and 9 next week.  This will be temporary until we decide upon a new plan of action.  We have a neurology appointment on August 15, and will be meeting with an epilepsy expert.  He will go over Levi's medication, and I imagine he will come up with a new game plan.  It's only been one week since we started Sabril, and I was so excited that this might take away his seizures.  Now I'm excited to be off of it!!  We just have to find the right medication, or combination of medicine, that will work for Levi.  Please pray with us that God sheds light on the situation and we will find the correct medicine very soon!

We had a meeting today to add vision therapy, which went very well.  Our OT Diane was able to work with Levi and, ironically, he was more alert for her today than he has ever been.  The little trooper was awake a lot today, although he still looked dazed.  Poor little guy.  Tomorrow should be better for him.

Thank you all for your continued prayers.  Our little Levi is such a blessing to us!

Seizure Diary - Spasms - 82 in 21 episodes; Ticks - 13

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