Until the Victory Is Mine

I was hoping to never again need my 10 mg Prednisone tablets...
I was hoping to never again need my 10 mg Prednisone tablets…

One of the hardest things about PANDAS is that you never know what it’s going to do next. Just as you’ve finally gotten your life back, it can strike again. Or just as you’re sure the fight is hopeless, things might turn a corner. Sometimes, it seems like there’s no rhyme or reason to its course.

Indeed, it wasn’t too long ago that my doctor said I was in remission. My family and I were stunned at the improvements I was making after my tonsillectomy. But this week, the unthinkable has happened: I am, once again, having a flare.

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Quietly Out of Control

When most people who’ve dealt with PANDAS or PANS think about being out of control, what probably comes to mind are episodes of rage, debilitating OCD, constant tics, and panic attacks. While these things are the most characteristic of the disorder, during the last few weeks, I’ve been finding that sometimes, you can be out-of-control and look totally fine on the outside.

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OCD Week: Unlocking The Box

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I couldn’t believe what I found in this box.

A few months ago during one of my trips home, I came across an old lock-box where I used to hide things as a child, but I couldn’t remember what I would’ve put in it. Tiny toys? Candy? Secret notes?

What I found there instead shocked me.

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Why PANDAS Awareness Matters

As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.

Once you’ve seen the face of a child with PANDAS, you can never forget it.

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