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  1. My cockpit has been hijacked. Over the past few weeks we had noticed that some of my son's behavior had been unusual for him. While perplexing, we coped, help him cope, and chalked it up to adolescence, increased academic demands at school, his maturity and an increased desire to be accountable, successful, blah blah blah. When I returned from my daughter's 3 day field trip just 11 days ago I was greeted with mayhem. Sudden, acute, confusing, helpless mayhem. We limped through the weekend, and then took our son to his pediatrician first thing Monday morning, and spent half the day at Seattle Children's Hospital. While our son was deemed "safe" to go home, we had few answers... but the term PANDA was used. A complete blood workup was done, off we went...back home, with our son that was not our son. Initial blood work was "normal", though his white blood cells and platelets are low - only to indicate "not much, he is either fighting or recovering from fighting a virus". The one test we would have to wait for was called an ASO titer, to see if AJ has or has had in recent months had the strep virus. Back to PANDA....research, read, freak out...this is my absolute diagnosis of course, this had to be it. My husband and I are dumbfounded at what we read, that something like this exists. Though we are so worried, at least this must be it. The ASO titer must come back elevated to show the evidence of the strep antibodies (or something like that....basic explanation). Not so fast. We found out that the titer was normal, not elevated, no sign of the virus. My hope quickly returned to despair, and we are now forced to begin the transition from an immediate medical explanation to explore a more immediate clinical explanation and begin treatment. We have been able to scratch our way past the sometimes months long waits into one of the best pediatric psych clinics in our local area. We met with the psychiatrist yesterday, most information gathering. We are trying to get into see an immunologist, with the help of both our pediatrician and the psychiatrist as everyone agrees that this is "atypical". Two weeks ago our son was one of the stars in his class play, and now he is plagued with OCD behavior, mood swings, and is unable to even see his best friends. I am researching experts on PANS/PANDA outside our local area (Seattle) as we are desperate for the help I think we need. In my heart of hearts, there absolutely must be a medical reason for this drastic and terrible change in our son. Thank you for reading this....and I am looking for any morsel of help, and input from others that have been in the same position but have come out the other side and returned to life as you once knew it. I am filled with despair, helplessness, and total fear. I have identified a couple of doctors whose names I have seen several times with respect to PANS/PANDA....if any of you have personal experience from either of them, please help. Out of Chicago - Dr. Miroslav Kovacevic and out of Palo Alto - Dr. Margo Thienemann.
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