Last year, our oldest son, Jack, was diagnosed with PANDAS/PANS. Over the past year, we’ve learned a lot about the brain, the body, and the impact an autoimmune disorder can have on both in the life of a young child.
After a year of being quiet about what our family has gone through, I feel both compelled and called now to share our story. If Jack’s journey and our experience as a family has the ability to impact even one family who is suffering or who knows someone who is suffering from this disorder, I want to help. And the best way I can do that is by being honest about what we’ve gone through and are continuing to go through with our sweet Jack.
As I mentioned in this post, there are aspects of Jack’s journey that will be off limits. With that said, there are many things I can and will share to help bring awareness to this condition and the estimated 1 in 200 families it affects in our country every year.
Because there is ongoing research into this new (and, in some cases, unrecognized) condition, I want to share with you what is commonly understood about PANDAS/PANS. So, I’ve broken this post down into what PANDAS/PANS is and what it isn’t. First, we’ll start with what it is.