Update for February:  With our last visit to see Dr Lobatz it was decided by the doctor to put Matt on Keppra, an anti-sezure med as a clincal trial to see if that would ease an issue with Matt’s right hand movement.  The issue is like a nervous tick that Matt developed over the past months.  The therapist as well as ourselves have been apprehensive to try this when it was suggested before because of the drugs many negative side effects.  Dr Lobatz wanted to do it as a clinical trial as he put it.  We did start with the drug 3 weeks ago while at the same time weaning Matt off a muscle relaxer that he was put on when back at Palomar Medical Center.  The therapists all agreed that Matt probably didn’t need the muscle relaxer since we keep him so physically active.  The trial of Keppra resulted in basically making Matt very lithargic.  With that, I was keeping the doctors updated on the effects of the drug on Matthew.  After 2 weeks we all came to the conclusion that the Keppra was counter productive and this week we began weaning Matt off the Keppra.  That had an immediate effect on how Matt was responding to daily activities in a positive way.  We should be off the Keppra by the end of this week and that should leave Matt very alert from what we have begun to see and able to be much more involved in daily activities including therapy.  All the therapist are really looking forward to the new, seditive free Matt.  He’s consistently done well in a relaxed state and the consences is he should be much more active feeling more clear headed than he ever has since they have all started working with him.  As for the hand issue, I have made a simple thumb brace that does control the movement while allowing him the full use of his fingers.  Jon Kern was out this past week and said Waleed has an even simpler, lighter thumb brace that we can use as therapy.  The way that works is to deny the activity, Matt’s brain will quit fighting the urge for the activity and the issue or signal is dropped.  Pretty simple.   

The interesting contrast with all of this looking back through the past 17 months since we started therapy is:  Doctors, neurologist included, treat patients with drugs trying to manipulate and counter side effects with more and more drugs.  The Therapist approach is to stimulate the brain by activate the body to stimulate the brain hoping to re-establish signal to the brain then back down to the body building more and more pathways in the process.  This has worked very well with Matthew and that’s how he continues to show more and more steady progress throughout the past months.  We’re hoping that a non sedated Matt will be able to work harder as this process continues.  We see him work trying to break through the fog that the drugs have kept him in so now things could start to move steadier.  That’s the hope so we’ll see…………

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