Monday, January 9, 2012

Arbaclofen Open Label

Drew started the open label part of the Arbaclofen study last Wednesday.  Some of the changes we've seen:

-He has been talking a lot more. He will spontaneously ask questions and make comments about things.  Things that make sense to the situation.

-The first day he was on the Arbaclofen, his aide sent me an email saying he had a great day, talking to his classmates, doing his work, transitioning well. She didn't know when he started the medicine, so that is exciting.

-We normally go to church on Sundays and the kids go to my parents' house. Yesterday morning, I wasn't feeling well, so we decided to stay home. I was hesitant to break the news to Drew, but when I did, he didn't get upset, just said ok.

-Since I was in the hospital, Drew (11) decided he didn't like baths. Eric used it as an opportunity to transition him to showers. Well, he screamed and cried all through the shower for the past few weeks. It has gotten less and less, though.   Since starting the Arbaclofen, he hasn't cried during the shower and has even been asking if he can take one.

-His aide said that he wasn't as happy today as he has been thus far, but still was polite.  She said he tried to talk his way out of doing every assignment.  We'll be making adjustments to his dose over the next month, so hopefully things will keep getting better and better for him.


the other lion said...

awesome! so glad to hear it. and glad to hear you are on track medically.