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.

Here We Are. I Think.

I'm not quite sure where we are these days. I've been Autism Mom for nearly a decade, but now there might be more to it than that.

Years ago during the 50 million hours I spent researching ways to help my son, I stumbled across something called PANDAS. No cute teddy bears here- just kids who struggle to be compatible with life. I mean that in the most literal sense. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. What a mouthful. In short, it's the occurrence of an autoimmune reaction to an old strep infection. Basically, the body goes into attack mode long after a strep infection should have hit the road. Though I came across this years ago, I didn't think much of it because Autism Mom is just Autism Mom. Don't get up the hope that you'll actually have something to treat. Just deal with it and give him supplements. Lots of supplements. And go broke doing it.

We rolled with our autism bubble for a few more years until I got desperate again. Treating an ill child goes in phases. Some days you have the energy to Google how Jenny McCarthy healed her son sans gluten and food coloring, and other days you throw bomb pops at your kid and tell him to go play in the street. I was out of steam for awhile. My own thyroid cancer bubble didn't make things easier. My kids practically learned to live in a doctor's office one way or another.

Hey kids! It's time for mom to get some more blood work done. Er wait, maybe it's an appointment for Rowen. Who cares! Let's load up and find some doctor- any doctor- that we can hang out with today. Load up, kids!

I've always called it the Autism Monster. Not Rowen. His monster. Our monster. It's the negative thoughts that tell him he's no good. It's the emotion he can't quite keep at bay. It's never feeling good no matter how much zinc and Vitamin B12 we shove down his throat. And by the way, you can't even be in the Autism Mom club unless you give your child fish oil. I'm pretty sure I was once shamed for my misstep on that one.

You research and research and find the craziest things that might help. Olive Leaf Extract. Basil. Cilantro. Weed? Seriously. You draw labs hoping to God they come back with something positive you can throw some Lavender oil at, but nothing ever comes.

Until now.

PANDAS. We haven't been officially given this name yet, but when his doctor called me to tell me my Mommy Powers FINALLY got us somewhere, I wanted to drop to my knees. His strep titers were elevated. We found something. This child has never had strep throat that I know of, but What in the-? Before this new doctor even drew the blood, I asked if we could start treatment. Game Face On.

I may be a little eager, but forgive me if I feel like I have a time bomb strapped to my head. Rowen has had suicidal thoughts for years. He's 11. E-L-E-V-E-N. Just last night he told me he feels trapped by life and asked if he'd really go to Hell if he killed himself. Forgive me again if I fudge that one a little. I don't think that's the time to talk Heaven up no matter how excited I am to be there someday.

So I feel the need to spread the word a little. PANDAS isn't well known and is actually somewhat scoffed at in the medical community. But that's where my Autism Mom powers come in. I could care less. We left conventional medicine years ago, somewhere between the prescription-strength probiotics and CBD oil.

If you think about Rowen today, say a prayer that we will find a way for him. Pray that he will find a way. Or better yet, that God will continue to direct our way out of this mess. I read yesterday that the enemy doesn't just seek to direct us off course, but that he seeks to devour us completely. I'm feeling that one for sure. The good news is that God gives us everything we need to be victorious. I'll clink my glass to that. Game On.