Aidan shook his head 'No' and grimmaced his face!



Aidan donning his rebel attire

 During the night and again this morning Aidan responded to a nurse pinching his hand, he grimaced his face.  The 2nd time she did it he furrowed his brow.  After she suctioned him he shook his head 'No', as if to say 'Stop, I don't like that'.  He is responding to stimuli and questions ever so slightly.  We're thrilled!

Yesterday he was not stable enough to complete the MRI, his heart rate and blood pressure could not be stabilized while being transported on the vent.  He was accompanied by the the MD's and a Respiratory Therapy Supervisor, but even with supportive care and specialists it could not be completed.  We're hoping to try again today.

Another nerve conduction study was performed yesterday and the findings were not the classic presentation of GBS. He has movement in his hands and feet, but only when the probe is placed directly on them and not at the elbow or knee.  This is indicative of nerve damage in the mylan damage - essentially shorting out the nerve endings.  Typically, in GBS that last thing to respond are the hands and feet and his are, so this is still puzzling the specialists.  Aidan has the most rapid onset of GBS in the worst form, at least if it is GBS, which they are almost certain it is.  Typical GBS is ascending paralysis, but Aidan's is descending, which could be another variant.  Most recover 100% with rehabilitative therapy.

The results came back from the CDC - negative for: West Nile, Rocky Mountain and Lyme's.

We have consulted with another Pediatric Neurologist who is locally based but outside MMH's group, as well as another expert at CHOP (Children's Hospital of Philadelphia), who has come highly recommended. 

Today's plan - complete the MRI, consult with additional MD's and continue the plasmapheresis.