Some have asked, so I wanted to give a quick update. My daughter has been sick for nearly two years now, with an official diagnosis of autoimmune encephilitis and an unofficial diagnosis of neuro deteriative disorder of unknown origin. We live in Columbus Ohio, home of one of the better Children's Hospitals in the nation, which is lucky. We also have a team of specialists at Duke University helping with the autoimmune portion of the disease.
The good news is, the autoimmune piece of her condition appears to be progressing as expected. We will be weaning her down from some of her heavier drugs and IV treatments over the next 9-12 months. Her most recent trip to Duke was positive enough that they won't need to see her again for 12 months unless something changes. She is back to attending school full days, although with conditions and assistance, and she has regained her strength and balance to the point that she almost never needs her wheelchair anymore. All this is considered to be, as you can imagine, very positive developments.
The bad news is that the neuro deteriative piece is still unknown, and likely not treatable. Her social and intellectual development had her being tested for the gifted program at the end of first grade, but barely able to complete kindergarten level work by the end of second grade. She is now in fourth grade, and is doing very well with math but still struggling mightily with reading. She loves art and music, and is able to have the hand eye coordination and small muscle movement to be able to do some great artwork, but can't stay focused or with enough stamina for much in the way of organized activities. She resembles someone with autism currently, in her development and social skills, and at age 9 in 4th grade behaves more like someone in 1st or 2nd grade at age 6 or 7. We are currently preparing ourselves for the eventuallity of one of three things happening: She could suddenly have a switch 'flipped' and begin developing more in line with her age and grade peers, she could be starting over from this point and begin a slow but steady development, or she could stay the equivilant of a 7 year old for the rest of her life, and the rest of her life could be 70 years or it could be 2 years if the deterioration begins to affect vital organs.
I appreciate everyone on here sending personal notes and thoughts and prayers. I am glad to have collecting as a break from reality. Everyone hug your loved ones tight.
