Leading up to John Hopkins

To bring everyone up to this point I will try to summarize the last few months. It seems that everything started around labor day of 2009 when Dave had a sinus infection that resolved. A few weeks later in mid September he started feeling a tingling sensation in his hands and feet that progressed over the next few weeks to trouble walking, slurred speech, fatigue and double vision. On October 9th he was admitted to St. Lukes hospital in Allentown and underwent extensive testing. St. Lukes was not able to find a diagnosis and thought that this was likely caused by a viral infection and sent Dave home with instructions for outpatient physical therapy. At this point Dave was able to walk with help but was still experiencing the tingling senstions, visual problems and slurred speech. Over the next several weeks he went to PT however the therapists were not seeing an improvement and in fact told Sharon that he was getting worse.
On November 11th Dave was admitted to Lehigh Valley Cedar Crest also in Allentown. At the time that he was admitted he could barely walk even with help. His visual problems were getting worse and his speech was also getting worse. Testing at Lehigh Valley was even more extensive. Originally they thought perhaps this was Paraneoplastic syndrome but after having every cancer screen or scan performed they could not find any cancer that could cause this. They also extensively looked for antibodies in his blood and spinal fluid that would indicate Guillain-Barre Syndrome (GBS) or paraneoplastic syndrome and were unsuccessfull. Both of these conditions were ruled out and eventually Dave was diagnosed with Birkenstaff's Brainstem Encephalitis (BBE). The diagnosis of BBE was relatively good news as all the information that you can find on the internet suggest that full recovery is the norm. Lehigh Valley treated Dave with Plasmapherisis and Immunoglobulin therapy (IViG). Plasmapheresis is a procedure where the plasma is removed from the blood and replaced with hemoglobin, it essentially cleans the blood as the plasma is where all the bad antibodies that Dave's blood is producing is stored. This procedure was really rough on Dave and left him extremely fatigued. This was then followed with a course of IViG and initially seemed to help. There were signs that he was improving and it was thought that the combination of plasmapheresis and IViG had been enough to kind of jump start his immune system in the right direction and he was then released to Good Shepard Rehabilition Center to begin recovery.
Good Shepard admitted Dave to their acute rehabilition center where he would receive at least 3 hours of physical and occupational therapy a day. When Dave was admitted to Good Shepard he could not walk, sit up unaided and his speech was severely impaired. At first, the increased PT and OT was good as we all looked at it as the start to Dave getting his life back however the 3 hours of therapy a day proved to be too much for him. On December 9th, Good Shepard requested a second opinion of the BBE as they were not seeing any improvement in his condition. On December 30th, after a couple of really difficult weeks, Dave was transferred down to John Hopkins Hospital in Baltimore for that second opinion. It is important to note that BBE is so rare that Drs at Good Shepard had never treated anyone with this condition and really did not have a good understanding of what it was. We have sinced learned that Dave does not need/cannot tolerate Acute therapy (>3 hrs a day) but rather SubAcute therapy (<1 hr a day)