Misdiagnosed

I guess I've been stripped of my title. I've traded in my Autism Mom status for some new digs. You can call me PANDAS Mom now. It doesn't quite have the same ring, or for that matter the same understanding as do the widely known spectrum disorders that I've been advocating for all these years. It doesn't make as much sense to people when they hear- PANDAS what? Huh? You mean like the bear?

Yes, we did learn he was positive for strep titers months ago- this from a boy who has never had strep throat in his life. That pretty well did it for me, but the definitive answer came yesterday when we received the results of a very expensive panel of blood we've been waiting on for weeks. It's a blood panel that only one lab in the universe conducts at $925 a pop. It was worth it though to show the insurance company who's boss. Treatment is the next step and we have to prove he's sick. After all, PANDAS isn't really something the medical community as a whole is up to speed with yet. 

When the lab released the results to me, the woman on the phone told me it was positive. "He's been sick for a really long time, hasn't he?" she asked. Wow you can tell that by this test? Tears flooded my eyes. YES! HE HAS BEEN! The Cunningham Panel measures five different types of antibodies, of which you need only one to be considered positive. Rowen had two, plus two more borderline. I can't help but feel responsible. I dealt with strep as a kid more times than I can count and I have an autoimmune disorder. I'm sure there's a connection there. 

So now what? We need to kill the infection, but long term antibiotics are problematic too. We did one round of them already and Rowen contracted C-Diff. Awesome. It's like chasing our tails. Once we get the infection under control, we have to deal with a disaster of an immune system that has been under attack all these years. Specifically, it's his brain that's been under attack. Thus, the OCD-like symptoms, anxiety, moodiness, anger, impulse control, and ADHD have emerged from that. Oh, so he's not just a total jerk? Phew! I've been told of an immunotherapy treatment that costs upward of $10,000 per infusion, per month. Hmm, sounds reasonable. 

We don't live in the same world as most others. We live in the world of expensive integrative docs that are not covered by insurance. Our mode of treatment is mostly out of pocket because the FDA is way behind the times and in it for the money. Ok, stepping off my soapbox... again. We are working on a heavy metal detox right now- all moms do that, right? Poor Brenner gets texts at work like, "Hey hun, $150 for the next big thing that's supposed to help but never actually does. Cool?" God bless him, he always says to go for it. 

I just wish one of those doctors along the way would have said, "Hey, have you heard of PANDAS? Let's test him for this." Instead, we held tight to autism because that's all we had. I always thought he didn't quite fit, and around age 8 a psychologist actually retracted his autism diagnosis. I've never really told anyone that, because where would that leave us? I white-knuckled his autism diagnosis after that. You can't tell me he's ok, because he's not. Please don't just leave us here. 

So please pray for discernment. For a path to healing my boy. For insurance to help with treatments we may need. For Rowen's body to respond. Such an old infection is going to be stubborn. After all, I've been Autism Mom since he was three, so that's probably when this sneaky infection was actually born. And please spread the word. I think many more kids are affected by this than we know and other families are suffering like we have. Let's do some good for these kids and give them a voice. Here we go, fingers crossed.