ch-ch-ch-ch-changes

georgia.

Last month, I wrote a piece about our family’s experience with PANDAS, not only because I felt a need to write it, but also because I thought others might need to read it.  But now there’s something else I need to write.

Toward the end of that piece, I said, “And now, after twenty-four hours on antibiotics, she’s acting like herself again. Just like that.”  But things weren’t exactly back to normal.  Not really.  There was the emotional aftermath, the emails to teachers and guidance counselors attempting to explain. The exhaustion and you’re really lucky; it could have been much worse. Then more throat swabs and confirmed cases of strep.  As the pediatrician wrote another prescription for amoxicillin, the third for our house that week, I joked with her about the little blonde in the paper dress on the examination table before us:  should I expect this one to act crazy, too?  The doctor smiled but didn’t laugh, and said only, What your other daughter has is incredibly rare.  

What she has.  Not what she had.

self-portrait.And even now, more than six weeks later, I still feel like it’s what she has.  Because, really, things are a little bit different now.  For Georgia, strep is not a sore throat, it’s “a disease that makes you think bad thoughts.”  And there are new rules for Georgia and sore throats.  Because something like this can happen again, the next time she gets sick.

There are nights, still, when she says something out of the ordinary, something that echoes that one Thursday night, and I shoot my husband a look that says, See?

All this week, she’s been complaining that her stomach is bothering her, and that she keeps burping.  Always at night, just before bed.  It frustrates her.  It makes her cry. And last night, she became urgent, yelling through her tears at me that her stomach hurt, that she couldn’t stop burping.  I thought she was going to throw up, so I directed her toward the bathroom, and she stood over the toilet, clutching her tummy and burping.

tree-hugger.

That’s when I realized she was panicking.  She was gulping air, swallowing it, burping it back up again.  And she couldn’t stop.  Again.

I put her into bed, covered her up, and rubbed her back.  With closed eyes, she said, “It’s okay.  I’m okay now, Mommy.”  She burped a few more times, and then she went to sleep.

Before, I might have thought it was something physical.  Like indigestion.  But now, my first  response was that this was just another episode.  This is just what happens now.  Because now, everything is changed.

And I wonder if I have changed more than she has.

I watch her tug at the waist of her soccer shorts and tuck in her shirt, over and over during the game, and I wonder if this will turn into some kind of attack.  I read a sentence she writes for her spelling homework (I like it when my work is finished, because then I don’t have to worry) and I wonder where this anxiety comes from.  I overreact, I ask if we’ve pressured her (my husband says no), I don’t understand her innate desire to be perfect.  And so I blame the strep.

soccer girl.The thing is, I’ll never know.  I’ll never know if this is just how she’s wired, how she’s always been wired, or if it has something to do with having strep in January.  What I do know is that this is who she is now. This is who we are.

you down with OCD? (yeah, you know me.)

“I was going to say you’re stupid, but you’re not.”

I exhaled. Loudly. For days, now, she had been doing this. It had been a long week. Georgia and I had come down with a mean sore throat on New Year’s Eve. Teddy was teething and screaming and clingy. Both cars were having trouble. And work had started back up on Thursday.

“I was going to say you’re ugly, but you’re not.”

“Georgia, you need to stop. You can’t say these things.”

“But I just keep having these thoughts. Like I was going to say Jane’s stupid, but she’s not.”

My neck muscles tightened each time she said it, each time I couldn’t get her to stop. On Thursday night, it reached its pinnacle, and I reached my limit. She sat on the tile floor of the kitchen, her knees pulled up to her chest. “I was going to say I hate you, but I don’t.” Her eyes were wide and unblinking. I yelled. I screamed for her to stop. I was inches from her face, and I had her by the arms. But she just kept going.

“I was going to say I don’t love you, but I do. I was going to say I hate you, but I don’t.”

I cried. I didn’t know what else to do, so I cried. I curled up in my bed and I cried. I told her not to talk to me until she could stop saying those awful, awful things.

But that was the problem; she couldn’t stop.

I heard her crying in her bedroom. My husband’s voice was low, almost a whisper. But Georgia’s voice was high-pitched and teary. “I can’t think good thoughts. I’m trying but I can’t.”

She cried until her face was splotched red, and her blue eyes seemed to glow. The hardest part was watching her struggle, watching the sadness take up residence in her face. And to know that there was absolutely nothing I could do. She told me, “Mommy, I love you more than anything.” I held her, I squeezed her, I told her how much I loved her. And when I tucked her in, she said, “I thought of killing you, but it was because you were wearing a disguise.”

“Georgia–”

“No, Mommy. I dreamt it right now.”

“Right now?”

“Yes, when I closed my eyes.”

I sat in the darkness of her bedroom while she slept. I listened to her breathe. She was sleeping deeply, almost snoring. She was exhausted.

So was I.

I thought that I had lost my child, the child I knew. My sweet, smart little girl. Something was very wrong. She had never said anything like this in her six years of life, and now she couldn’t stop. I thought of how difficult her life was going to be from now on. I thought of how different all our lives would be.

At work on Friday morning, I was glad for the distraction. And then my husband sent me a message: “You’re not going to believe this. Look up PANDAS.”

So I did. And of course, the first thing that came up was a Wikipedia site describing the endangered black and white bear. But the second site was this.

I searched through site after site. My eyes moved over the words faster than my mind could process. What if that sore throat had actually been strep? What if that was the source of this sudden compulsiveness?

I called the pediatrician’s office. I knew that I sounded like a crazy person as I described my daughter’s symptoms. My voice wavered as I explained to the receptionist about the downright scary things Georgia had said the night before. And I knew that I sounded desperate when I said that I needed to know if the behavior was linked to the illness, when I said that I didn’t know who else to call.

The receptionist got the nurse, and I explained it all again with the disclaimer, “I know this sounds crazy.” The nurse got the doctor. Yes, the two could be linked.

On Saturday morning, I held her arms again, this time while the physician’s assistant swabbed her throat. I never thought I’d be relieved to hear a doctor say that a test for strep was positive.

So that was it. We had had strep, and I hadn’t known it was strep. (In retrospect, I suppose that I should have. But we’ve never had strep, and by the time I was ready to take her to the doctor, she was feeling better.) And now, after twenty-four hours on antibiotics, she’s acting like herself again. Just like that.

I’m not writing this to be dramatic or woe-is-me. I’m writing it because I had no idea that PANDAS existed, and that must mean that other mothers and fathers don’t know, either. And that maybe, there’s a parent out there right now, Googling desperately in an attempt to figure out what has happened to her child. Perhaps she’ll land here and find a bit of hope.

my girl.

Additional resources:

http://pediatrics.aappublications.org/content/113/4/907.full

http://intramural.nimh.nih.gov/pdn/web.htm

http://www.adhd.com.au/PANDAS.htm