When I was first diagnosed with PANDAS in 2014, my doctor said the treatment plan was to give me “the whole kitchen sink.” In other words, I would receive the full range of therapies, many of them all at once. It was unscientific, since this made it hard to tell which treatments turned out to be the most effective, but for a girl who could hardly walk and had lost over 10% of her body weight, this approach was necessary.
During my first few months of treatment, whenever anyone asked me what percent of myself I felt I was, I usually said 80 or 90%. Although I believed this was accurate, I was grossly overestimating my level of wellness, because I’d forgotten what life was like at 100%. As I’ve said before, I’ve never realized how ill I’ve been until I’ve gotten better.
To me, one of the most difficult parts of recovering from PANS is how, just when you think you’re done having symptoms, your life can change again in a day. Sometimes, I feel like with PANS, the only certainty you have is the uncertainty of the course of the illness.