Chorea

[Guest guest]

Hi there

I wanted to tell you guys that after seeing the docs at UT Med School on Friday, we just had our minds blown. The overdose of Seroquel is not the primary problem (though I'm sure it certainly didn't help any). DS has Sydenham's Chorea. You haven't heard of it because it's been mostly erradicated in civilized countries since the 1970's. DS is somewhat immune compromised and obviously a strep infection or rheumatic fever is lingering inside of him. It has caused chorea (which is pronounced like "Korea"). Our neighbor and friend down the street (who is also our Pharmacist) has Scarlet Fever.....so here we are.

Besides the tell tale tongue thrust\mouth smacking, grimacing, finger flicking like playing a piano, and wild arm and body movements, it causes age regression, anxiety, ADHD, OCD, mood swings and instability, confusion, difficulties with dressing, writing and upper body muscle weakness. Trust me when I tell you that since almost two weeks ago, NONE of this was subtle or what we've experienced previously...and it came on suddenly. Here's a YouTube page I made for our friends and family that shows waht I'm talking about:

http://www.youtube.com/my_videos?feature=mhum

That being said....it mimics Autism in the beginning. He's had strep pneumonia infections since three so it's a very real possibility that he's had versions of chorea since three....which was about the time we started noticing odd hand and arm movements....ADHD, anxiety, OCD, mood swings.....

The bad news is that as it's as a result of Rheumatic Fever, there's a chance he may have damaged his heart. So....it's bittersweet: the chance that since new docs have never seen Sydenham's Chorea and doesn't know what it looks like, they said Autism....but we figured it out late in the game and we may have damaged his heart.

Before you yell at me, of course he'll probably always have Aspberger's....and he may even have some HF AU. I'm good with that....but to find the cause of what's behind it....is just amazing...or at least behind it for us.

I would not wish the utter Hell that DS is going through right now on any of you or yours. It'll probably be nine months to a year before it begins to dissolve (meaning the chorea effects), and he may relapse from a year and a half to two years. Here's praying that his teachers and school will ride it out with him. And I'm already crying over yet another lost year of education but at least there's light.

However, the kid is resilliant beyond words. Remember, he also has PTSD from the first four years of his life. And if it's true that he's had it most likely since three, he's always thought that *this* was his reality. True, we can say that of all our AU kids but somehow I've always thought he straddled two worlds. I was right.

Sorry so long...just wanted to share that with someone because frankly, I'm still in shock.

~C