Monday, June 3, 2013

Memory Monday (New Equipment and Neurologist) 11/17/10 - 22

Wednesday, November 17, 2010

Today Jackson got his communication device and environmental controller.  Gary from South Texas Medical was here for 2 hours trying to get everything set up.  It took Gary, Heidi (speech therapist) and I quite a while to figure it all out.  Two phone calls to customer support later we found out that one of the controllers was defective.  He doesn't seem too impressed with either right now but I'll keep working with him.  He will get a light box and music mirror later this week. 

Big Mac switch and Environmental controls

Jack posing with his tactile communicator

 So after my good afternoon I got a call back from his neurologist.  He spoke to the neurologist in Houston to get confirmation on what I told him the day before.  He wants to keep in contact over the next few weeks while we increase his Baclofen.   I didn't see any improvement with starting it but he's only had it once.  He also told me that he would consider weaning him off of Keppra!!  Music to my ears!  Of course I don't want to do it right now since he just started the Baclofen but maybe in a month.  I told him that I don't think that the Keppra really did anything for his seizures so he's willing to get him off of it.  Then if he starts to have more seizures he can try Depakote or go back on Keppra.  I've read so many stories about once a child is off Keppra the keto diet works much better.  Even though it was good news I still felt "deflated" after. 

Posted by Tracy at 5:22 PM 1 comments