riffleshell

I just want to chime in and say that I sympathize but I have no easy answers. Early bedtimes do help A LOT but I can't always make them happen over here either.

I feel like I've seen fewer of those crazy hypoglycemic mood swings in my PANDAS kid since we've been supplementing with Vitamin D3.
 
He tested low last winter; even just 1,000 IU a day has seemed to make a difference.

Yes. One simple place to start: An ASO of 859 is far, far higher than normal for a child that has not had a strep infection since 2011. I say "simple" because any decent pediatrician (even one who is not a PANDAS expert) ought to raise an eyebrow at that. You might be able to get someone to give you some antibiotics based on that number alone.
 
Good luck!

Yes. One simple place to start: An ASO of 859 is far, far higher than normal for a child that has not had a strep infection since 2011. I say "simple" because any decent pediatrician (even one who is not a PANDAS expert) ought to raise an eyebrow at that. You might be able to get someone to give you some antibiotics based on that number alone.
 
Good luck!

Your daughter is lucky to have you on her team. Sounds like you have all been through quite an ordeal.
 
One small thing you might try, if you haven't already: I would see if you can mix in some probiotic powder in her food. I find that they help greatly with my son's anxieties.

Right now I do a Flora Udo's brand with 31 strains. Before I was using a different product from the same company that had 8 strains. You might also try and see if your child can tolerate prebiotics.
 
I've read that giving probiotics after antibiotics is like planting corn after you've burned down the rainforest. The species we know how to cultivate and put in a bottle may not actually be what we need to replace was destroyed. It's better than just leaving the earth scorched, however.
 
If you haven't read this article yet, well, you must. It's an interesting read, if nothing else.
 
http://www.nytimes.com/2013/05/19/magazine/say-hello-to-the-100-trillion-bacteria-that-make-up-your-microbiome.html?pagewanted=all&_r=0

Our DS was in such a deep, dark hole once we found PANDAS and PANDAS treatment, the recovery at first looked like a bottle-rocket . . . we saw such dramatic improvements, so quickly. We were amazed . . . but also misled. After that, it's been more or less like a diet . . . at first, the weight seems to come off pretty quickly, but those last 10 pounds?!?! Ay, yi, yi! Slower than molasses moving uphill in winter!
 
We went from 100% nonfunctional to functional (in school every day, participating again in social activities, doing well academically, sleeping well, etc.) within about 9 months; the dramatic improvements plateaued after about 2 weeks, and after that it was pretty much saw-toothed recovery and plateaus during which we thought maybe it'd gotten as good as it was ever going to get. But by journaling consistently, we were able to see that though his gains were far more nuanced as time went on, they were nonetheless coming, and consistently sticking.
 
Time has been an important component in the process, in the end.

a peaceful Holiday and a New Year full of healing.