Thanks for the support!
I’d like to add that although we have been through many doctors that were not interested in taking such a challenging case, persistence does pay. One of the first doctors we saw when Jen was diagnosed last October just shook his head and commented that there was no cure, and left the hospital room. My daughter and I were in such shock. We never wanted to see him again, thinking it was only a matter of time.
Fate brought us together again one night when I rushed my daughter to the emergency room and he was on call. This was at a time when the hospital could not (would not?) accept ivig patients due to the shortage. To make a long story short, I was able to develope a relationship with this man, and educate him about the many variants of gbs, and the neccessity for continuing care. He was compassionate and understanding, and became an ally in our struggle to get ivig. To this day, I credit him, knowing my daughter now has access to a weekly infusion that he had to fight for.
By the way, he is not the same neuro I spoke of in my earlier post – that one is history!