24 November 2010

A new neurologist

Liam had an appointment at Chapel Hill this past week that I hesitate to even mention. It was, for all intents and purposes, a complete waste of time.

People don't go to a neurologist unless there's a problem. So, I know they don't have the greatest job in the world. They don't get to spread peace and happiness with all of their patients.

I really just wanted to get some information from him about HBOT, stem cells, and a new medication to help with his ataxia/athetoid movements.

He said Liam has spastic diplegia in his legs. That mean that he has higher than normal muscle tone and it affects both legs. We already knew that. Fortunately, Liam's high tone, while it causes trouble, is not severe for now. What I found interesting was that when he checked Liam's reflexes in one leg, both legs would bounce. It was fascinating. And it wasn't normal.

Then he said that Liam's upper body is either severely ataxic or was athetoid.

Ataxic is the inability to grade your movements and will cause the person to move all over the place while trying to get to one spot. It is planned movement that is very uncoordinated. Athetoid is when the body moves uncontrollably because the brain is telling it to move even when they are not wanting to.

The neurologist felt that Liam was athetoid because if he was ataxic, he was severely so.

The therapists and myself included feel that Liam is severely ataxic. He does want to move and when he goes to move, he is all over the place. And when he doesn't want to move, he lies perfectly still. He does not show the normal patterns of an athetoid cp kiddo.

The neuro did say we could try Liam on a drug called Sinemet. It is a drug that crosses the blood brain barrier and activates his dopamine receptors. It is commonly used in Parkinsons' patients.

See that big bundle of tissue at the base of the brain? That's the cerebellum. And see where the dopamine pathways run? They run right to the cerebellum, which Liam doesn't have.

One of the side effects is nausea and vomiting. And that makes me very, very nervous. Liam is doing fabulous on his current diet. He doesn't vomit anymore.  But, I'm willing to give this med a try if it would help with his ataxia.

Oh, and his opinion of stem cells and HBOT?

He thought is was complete b.s.  But that's another post.

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