P.A.N.D.A.S. - the syndrome, not the bear
(September 17, 2010 -- Edited to add: Today I am posting an update on Julie and her PANDAS treatment and I am unlocking this entry. Since this will now be open to the public, I am deleting the private posts from my readers in the comments section.)
I am locking this post for now because the subject matter feels too personal and private to share yet. In time, however, I will either unlock the post or I'll re-post about PANDAS because I think it's something everyone should be aware of. So, if you comment under this locked post and you want me to delete your comment when/if I unlock this entry, please let me know and I will do that.
One of my closest friend's daughter, who happens to be the best friend of my daughter, was just diagnosed with PANDAS, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections. The little girl, we'll call her Julie, is eleven years old and had strep throat several months ago and was treated for it. But apparently the antibodies (not the bacteria) have attacked the part of the brain that controls thought and movement.
The family didn't know anything was wrong until a couple of months ago when Julie began to show signs of severe OCD, tics, focusing problems, joint pain, and other mental disorders. She does things like brush her teeth for exactly a half hour and wash her hands for that amount of time too before bed. She developed other rituals that include tapping her foot a certain way before she takes a step, touching specific items in a particular order, etc. She loves to read, but her lack of focus is preventing her from being able to. She does gymnastics, but her tapping rituals have slowed her down.
It has only been in the past two weeks or so that the parents have figured out that the OCD behaviors are the strep-related PANDAS syndrome. Since then, my friend has taken leave of absence from work and isn't even sure if Julie will be able to attend middle-school in the fall. They are seeking treatment from the best PANDAS specialists in the country and they've heard that there are miraculous recoveries as a result of this treatment.
I've done some online reading, but I was wondering if anyone here knows anything about this disease? Do you know anyone who has it? I'm trying so hard not to be terrified, but I want to be realistic too.