Day 10 post-IVIG
The battle with the Bear rages on.
New PANDAS symptoms have appeared. I'm pretty sure he's had every possible one at this point. Ones I never thought we'd see. It gets worse before it gets better.
Max is so good at pretending everything is fine. He allowed us to fool ourselves for years. When the family is stressed (which is pretty constant at our house for a lot of reasons) Max responds by trying to be the kid who has no problems. He helps with the little ones and keeps out of the way and pretends he's doing great. This falls apart when he flares, of course. But the flare passes and he's back to pretending and we're back to believing, Until he got diagnosed this past year and I realized he hasn't been fine in 8 years. He just didn't want to worry us.
I look at him now as the war with the Bear enters its final contest. He is tired and hurting. Throughout the whole house, troop morale is low. I keep reminding everyone "It gets worse before it gets better. Really. I swear."
We keep him from crowded places to try to keep him from getting sick. This works out well because he is completely agoraphobic when he flares. But he needs some fresh air and sunshine so we force him outside. He hates us for it. Well, the Bear hates us for it. I keep this in mind. I remind him. I remind our family.
His emotions swing dramatically second by second. He is angry and defiant. Easily triggered into demonic possession style meltdowns. Bored and scared and not eating (if he were well, he would point out he was anhedonic, anxious and anorexic. And he would laugh and be delighted with himself for thinking of it. And I would laugh and be delighted too).
I come home from work and there's a note on the fridge.
"Who wrote this," I ask. It looks like the handwriting of my legally blind son with autism who has worked so hard for so many years with occupational therapy and his vision teachers to improve his control, but continues to have handwriting issues. But I suspect it might not be. Max has small, neat, pristine handwriting normally, but deteriorating handwriting is a symptom of PANDAS. Max has shown it before but never very significantly.
The message in the note does not sound like my Max. It reads, "Why are you always working mom im sad." The words of a sad, scared, lost little boy.
"I wrote it," a voice trails in from the living room. It's Max. It's hard for me to believe he's the one who wrote it.
"Who," I shout back.
My heart sinks. It's by far the worst I've ever seen his writing. The message of the note is heartbreaking too but it's the handwriting that gets me. It reminds me of a patient I saw recently, an older woman. I told her she needed to go to the ER because she might be having a heart attack. She told me she needed to go home first to make arrangements for her husband's care. She told me he had dementia. "He used to be such a strong man," she said, with a distant look. Now, he could do nothing for himself. He barely knew her. She was worn out and so sad. Her husband wasn't dead but he was gone.
Looking at that note, I thought, my Max did not write th