waiting through the storm..

Things seemed to have been getting better, or I should say the beast had gone to bed.

The holidays were approaching, I had found a doctor to evaluate but it was expensive. We had decided to try some of the common remedies used on PANS kids while we waited. Things had gotten better so I let the normalcy take over. No more appointments, no more evaluations, she was acting better, why ruin a good thing. I selfishly just wanted to enjoy the holidays as a normal family without anything ruining it.

Joke was on me.

Halloween came, my girl wanted to be wonder woman (how fitting) Her hair had grown back in and was getting long, it was beautiful. We went trick or treating, and I remember telling my friend we went with how things had been in the past compared to now, and how I hoped it was a memory. Maybe she didn’t have PANS after all. Maybe she had finally grown out of whatever was going on, and we found the right combination of meds for her. She was thriving AND HAPPY!

Not long after that she became sick with a stomach bug…. and immediately following…. my child woke up a different person… again

I remember my mom texting me, she was pulling again. My heart sank into the pits of my stomach. I said to myself “ok, we can get ahold of this before it gets too bad”

How wrong I was.

Within weeks, she was hit with the flu, a cold, and the stomach flu… and within those weeks, she had pulled so much hair, the entire side of her head was pulled to the scalp. She had stopped functioning. Her eyes dilated and empty again. The tremors back full force. But this time was different. This time was one of the worst. She couldn’t go to school, or dance. She had lost all control of her bladder function and was wetting herself. She had started hoarding food (and folk let me tell you, finding week old cereal bowls under the bed is enough to make anyone go crazy)

I finally pulled the trigger and called the specialists office, knowing again I was searching for a diagnosis they would probably tell me wasn’t her and they couldn’t help her. More money that was spent and lost. We had already accumulated so much debt on hope and answers. Trying this remedy, various programs for “brain cognitive repair” costing thousands of dollars. We had become behind on bills, our mortgage. And here I was making another appointment on hope costing hundreds of dollars….

But what choice did I have?