Another Bump in the Road

Aside from "PANDAS mom", lately I've dubbed myself the "hot mess mom" to boot. Not because I actually think I'm a hot mess, but because it's the easiest way to quickly dismiss the crazy mess we must seem. It's hard to understand a world where others are worried their kids won't make the grade when I'm literally trying to keep my son alive. I know that sounds dramatic (and I'm not one for the dramatic), but that's the way it is.

I've been working on getting Rowen the treatment he needs. It took ten years to get him the right diagnosis, so maybe I got a little too cocky thinking we'd actually get treatment in the same decade. Whoa, don't get ahead of yourself there, Amanda!

Ok, so now I'm actually being dramatic. I have all the confidence in the world we will get treated in this decade. Maybe. Check back with me in 2029.

Rowen hasn't gotten better. In fact, he's continued to decline. I've talked about him "flaring," which is the term used to describe a behavioral change in our PANDAS kids. One of my tip-offs, other than the off-the-wall behavior (and that's putting it mildly, M-I-L-D-L-Y) is when his pupils get really big. It used to come and go, but lately it's been almost a constant. The negative thoughts, anger, frustration, OCD, sleep dysfunction, and suicidal thinking is loud and clear.

I was full steam ahead trying to get the immunotherapy authorized through our insurance. I was on the phone daily, checking on the status. I know that sounds like overkill, but if you lived in our house for one day, make that one hour, you'd be on the phone too. Last week I got the call I'd been waiting for.

"I have some news," the lady told me. "Your request has been denied."

Huh? Did you say denied? Wow. I wasn't expecting that. I figured we had to get it for him, so it would have to come. Boy, was I wrong.

We are now appealing, and I'm waiting on pins and needles. It's like a full time job.
It all seems to be catching up with me though because I've had something of an emotional explosion today. I've cried in front of two people, and in between was rear-ended just trying to pick up my kids. Super. Why not pay a visit to the body shop while I'm at it all.

I'm feeling the attack of the enemy hard. Can I hope that means we are on the verge of change? I'd like to think so but I'm wearing thin. I've also been trying to keep my anger in check. I haven't been a happy camper. I'm human, I guess, but it's no fun.

So here's the take home. I'm asking for prayer. Please pray that we get this treatment and for the continued healing of Rowen. Hopefully I'll be out of a job someday and he will get to say he made it through.