I just spoke with the neurologist...Brayden does not have this disorder. The neurologist and neurogeneticist were surprised his blood work for this disorder came back normal, very normal, especially since his MRI showed a "classic case." If he did have this disorder, the blood work would clearly show it.
The plan is to see the neurogeneticist to review the MRI further and to possibly look at other metabolic or genetic disorders since there seems to be a "pattern".
We are also talking with the GI and neurologist about a ketogenic diet. Scheduling a visit with the ketogenic clinic. This diet is used for many reasons (extreme vomiting, seizures, possible disorder), we may try Brayden on it. One of which could have been because of this metabolic disorder.
The neurologist was pleased that Brayden did not have this disorder since it is degenerative (as are we) however she could not quite answer my question if Brayden's brain is getting worse or staying the same. Her answer was that he has such little white matter and very thin, as well as missing parts, it is hard to tell.
For now, prayers answered that Brayden does not have it. We are still looking for some answers and adding more people to see to Brayden's list.