Noah's very rare myelin disorder2

[David-Klijn]

  Thank you very much for your reaction.
  We know that Noah doesn't have Krabbe's or Globoid body leukodystrophy.
  It was the first thing the doctors tested for. They still don't know what is
  causing the problem. What they do know is that he did make some myelin. Like
  I wrote last time he is still on the level of a newborn baby.He just isn't
  making any new.
  The brainstem has myelin as does the rest of his body.
  So the problem is concentrated to the brain.  
   They've made two MRI scans, a VEP,an EMG,7 LP's and a load of EEG's.
  Except for the MRI's everything came back normal or negative.
  We are waiting for the results of a muscle and skin biopsy but the doctors
  don't expect anything from that. Right now he is back in the hospital after
  being back home for 4 days. He had a virus infection and a high fever and
  it completely threw him of balance. His situation is very instable at this moment.
  The way he is now we can lose him to a simple virus.
  The doctors ran every test they could think of and now the only ting they can
  do is make Noah feel as comfortable as possible.
  If you have any suggestions they are more than welcome.
  David Klijn.
Dear David:
Sorry I wasn't very much help.  It is funny that the myelination in the brainstem is not affected while the long tracts are involved.  This would suggest that the oligodendrocyte that is beginning to myelinate is the affected cell type while the oligodendrocyte that has already myelinated is unharmed.  It further says that the myelin already formed is unaffected.  This would suggest some perinatal process or insult.  Best of luck, sorry I couldn't help.
Sincerely,
CCF Neuro[P] MD