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.
