PANDAS keeping me up at night

Our nine year old son's tics have been out of control lately. His ribs hurt at night from the tic that makes his whole body clench. He's got a vocal tic, and also one where his arm moves in a circle. Lately, he's been talking as if his jaw is wired shut. It's another tic. 

Our specialist assumes it's PANDAS. His tics become severe about a week after he's been sick. Long-term antibiotics, the treatment of choice, (and one we held off on for years) have not helped.  We are considering a drug for the tics. Maybe to snap his system out of the continuous loop which starts once his antibodies overreact to infection and begin attacking his brain. 

Our son has an immune deficiency which has qualified him for IVIG. He got his first infusion this month and will receive five more over the next five months.   

Like I did with his sister in her early years of ASD, I wake in the night worried. I get on the computer and research while my family sleeps. What exactly is happening to my child's brain? I worry about the long term picture. I worry about it getting worse. I worry about permanent implications. No one can really tell me anything about that. 

Watching him tic every waking minute is overwhelming. Sometimes I can't even think. I can't breathe. And I know so many parents have it so much worse. He can talk. He's pretty happy. He's got no cognitive issues, other than some fears and phobias which don't affect our lives too terribly much. His is a mild case as far as PANDAS is concerned. 

But here's the thing. I'll die if anything bad happens to this boy. He is goodness personified. He is as sweet as they come. I can't take some stupid infection coming in and changing him in any way. I'm sick of it. I'm angry. 

So today I will draw on the strength of so many other parents here, those who face much more than we do. And I will keep researching. And we will go to the ends of the earth for this boy. 

And I will work hard to move up the emotional scale and stop feeling so helpless, because I'm not good for him, or for anyone from this place.  If I have to pass through angry on the way to hopeful, so be it. 

As the saying goes, the only way out is through.