Nowhere but Here

I've been feeling pretty angry lately. No news is good news, right? Wrong. We still haven't gotten the approval we need for Rowen's treatment. I just spent the past hour with him as he screamed about how much he wants to be dead. I promise you this isn't your typical teenaged roll of the eye. It's an honest-to-goodness want and desire to not exist on this planet anymore.

When he talks about this, I get angry. Not at him, but at all we've done and been through for so long to still be here. And not just here, but worse! The past ten years floods my mind like a Mack truck. Ten years of fighting, worrying, praying, working, trying, and getting... nowhere.

I get mad thinking of all the doctors I've sat in front of that haven't seen the underlying mass chaos living inside his body. I get mad that all I've said for years is "I just don't think he ever FEELS good" and was never validated that I had my finger right on the pulse the whole time. I get angry thinking about how I've known something has been off but never had the vehicle with which to take that feeling anywhere.

Now that I do, I'm still getting... nowhere.

I'm not mad at the doctors, mind you. We are all human and can only go as far as the system we live in supports us, eh? After all, PANDAS doesn't really exist, right? Wrong. Wrong. WRONG.

I sat down with my Bible and a journal the other day for the first time in a long time. It had been so long, in fact, that I took a peek in my journal and it was exactly one year to the day that I sat down again to write. Ok, God. You have my attention.

I read the entry and it happened to be about anger. I had written "I'm thankful for battles because they always show me the King." What a cool thought, right? And you'd think my reaction would be just as cool, but... not so much. Lovely sentiment, but HA! The angry two-year old inside of me wanted to punch something. This battle has been long enough, hasn't it? Rowen even said he feels like he is running out of time. How scary is that?! I FEEL THE SAME, GOD! ARE WE RUNNING OUT OF TIME?!

My eyes were averted to the bottom of the page: "Put down your weapon of anger and pick up the Gospel." Oh. Well. There it is.

Stand down, angry two-year old. Touché, God. I think I'm getting it.

I can't say this took away all my anger, because I can go there. Boy, can I go there. The trouble is, that gets me nowhere too. So I keep going. After all, when you have a sick child you become a machine.

Some days I don't feel like I have enough to fight with, but I don't have a choice. Good thing I also wrote, "You don't need a plan to overcome. Your first love is your Savior and He is enough." Well darn, if He doesn't have a lesson in everything I don't know who does.

I keep thinking my next post will be the one that screams, "YAY! We got approval for treatment!" I thought I'd have written those words by now. That is part of the reason I write all of this. I don't want you to forget to keep praying for us. For Rowen. So please take a moment here. Help us to see the King in this battle. That's all it takes.

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.

Keep on, Keeping on

It hasn't been pretty around here. Rowen hasn't been well, and I've had some mini breakdowns on the verge of the big one, or so it feels. We scheduled an appointment for Rowen with an integrative doc in a few weeks (eh-hem, our third integrative doc). I'm always hopeful, but this is a world where you get let down- a lot. This new doc is 3 hours away, though at least he is in our state.

There's so much I want to say so that people know more about PANDAS/PANS, but I also want to be careful about Rowen's privacy. He's 12 now, and isn't too keen on me talking about his health. So, this might be the dumbed down version, but nonetheless know that we struggle- hard.

Last night we had one of our moments where Rowen was talking about being done with his life. His pupils got really big (a sign of a flare) and he went to a horrible place in his mind. The best we could do was give him some ibuprofen to reduce the inflammation and try to talk him through it. It's like fighting a killer shark with a toothpick. I just don't have the big guns in my arsenal right now.

That's where this new doctor comes in- or so I hope. I am on the hunt for someone to prescribe an immunotherapy called IVIG (Intravenous Immunoglobulin). That's the one that is tens of thousands of dollars that we are prepared to fight for if need be. This is where your support and prayers come in. We need to load our arsenal with the big guns. We've tried the antibiotics, steroids, and anti-fungals and yet here we are. I know we are still learning and will probably round the bases on those treatments again, but Autism Mom turned PANDAS Mom is tired and angry. It's an old, old hat and there are many days I'm ready to throw in the towel.

When Rowen is exposed to sickness of any kind, he flares. I'm not talking some fantastic sense of style (that, by the way, I completely missed the boat on), but the overdrive his mood goes into. When you and I are sick, our immune system produces antibodies that fight infection for us.

Thanks, guys! Until next time! (Cough, cough, sneeze)

For PANDAS/PANS kids, their immune system produces antibodies that mistakenly attack healthy tissue. Unfortunately, one of the main targets is their brain. Could you imagine what it must feel like to have your body attacking your brain all the time? I know I can't. You see what antibodies do to sickness- in healthy bodies it's a complete obliteration until you are well. There is no switch to turn this off. Sickness only makes things worse. Sickness makes him "flare," into these raging places in his mind that are completely devastating. Life is not worth living at that point, or so he tells me. That's the scariest place a mom can be.

So I'm asking for prayers. His appointment is February 18. Pray specifically that we get this treatment and that it actually helps. We need some change to happen for this guy.

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.

Pieces of Home

We recently gave up our northerner status to move to the southern city of Goose Creek South Carolina. We are close to Charleston, so I'm not sure if we can be called Charlestonians or not- maybe Goose Creekians? I'm thinking that's probably not a word though. In fact, I'm sure it's not.

At any rate, we are here. I have worried long and hard about how this would affect Rowen. I figured Lane would catch on like he always does but Rowen is usually a hit or miss. So far so good with how he has adapted. He says he likes it here better, but I wonder if that is somewhat due to the fact that the 9-hour drive down is not something he is ready to repeat. Me neither, since I had 2 boys and a dog in a stuffed car. Brenner drove the moving truck down in utter silence.

Utter silence.

Mmm, silence.

Rowen and his brother have been getting along so much better. They sort of have to I guess, or they'd be bored out of their minds by now. There aren't any children on our street and with school being out we don't have a whole lot of options for them to make friends just yet. It's things like this that make me wonder how things will turn out here. I am sure we are in the right place, but I figured it wouldn't necessarily come easy.

At the pool the other day, doing my usual hovering over Rowen to make sure he was getting along ok, I spotted another mom with similar mom language. She was staying close by her boy who had special needs as well. He was 13 and nonverbal. I watched her for awhile as she followed his every move to make sure he was ok. She spoke my language on some level, I could tell. At one point she sat with him in the baby pool all by herself. I hoped she was enjoying the sun, but she was on. She was on like I often feel. Not a bad thing- hey it's time well spent with our kids- but it is an exhausting thing. An- I'm not really relaxing poolside here so much as I am on mom-spy duty- on.

I watched her on mom-spy duty for awhile. She was there for her boy. I doubt she'd have been standing in the kiddie pool staring blankly for any other reason. I had this urge to let her know that someone saw her. I saw her. I know the feeling of not being seen for who we are, and it can be lonely. I am sure Rowen is mistaken for a "bad" kid pretty often. I get it. I know how we look sometimes. It's not a conversation that I want to go through 20 times a day: "Well, he's a really anxious kid so he feels defensive all the time and can say and do some pretty rude things... eh- forget it, we are going home."

I'm sure most moms can say they feel unseen on some level, but for us it can be a little different. I wanted to run up to her and give her a hug- a high five maybe to say she was doing a great job. I also wanted to let her know that I saw her son. I wonder how many do. I sometimes wonder who sees Rowen. For those that have taken the time to see him beyond his rough exterior, he is there- a boy who just wants to be loved. He just doesn't always go about it in the best way- yeah, social cues? Not always his thing.  

So I had to. I walked over to her and extended a hand. Hi there, I am special needs mom too. I speak your language and wanted to say hello. I see you. I also see your son.

We talked briefly and though I knew her son couldn't answer my questions, I asked them anyway. I see you, sweet boy. I see you, loving mom.

On our way out that day, we happened to make an exit at the same time. Lane and I stood by the door as she shuffled out with her son. He looked at me and with no reservations reached out for a hug. He never spoke a word to me, but the look on his face said it all.

"You just made my day!" I said to him, knowing he wouldn't respond verbally. In that moment I felt a little piece of home again- 600-some miles away from Ohio and I realized that little pieces of home are everywhere. I am a special needs mom and I love my boys for every piece of home they give me every day. Even if it is a little on the exhausting side. I know some see me and some don't. I know some see Rowen and some don't. I hope more and more start looking and find what might be beyond our sight. Little pieces of home in a little boy who can drive me just as crazy as I love him. And that's a lot.

So I think we'll be ok. I am sure he will find his way. I am sure we all will. If I keep looking, I will see them. Little pieces of home in a place I never thought I'd be. But I am here now- with my boys- and we will call this home.

Bye-bye Nouns

We are homeschoolers.

Before you look at me as if I have horns sprouting from my head, let me explain!

We homeschool and it has been one of the best decisions I have ever made for Rowen. Granted, I may have a few more gray hairs but I am still alive and kicking. Well, alive anyway.

Our year started out ok but quickly fell under the category of "What the heck was I thinking?!" If it hadn't been for my obsessive need for complete and utter clarity before getting started, I may have thrown in the towel. Many times. But clarity in doing what I was doing prevailed. And Starbucks.

I learned that Rowen's anxiety did not only stem from classroom distractions when it came to academics. I experienced it with him in a quiet room with just the two of us. He would worry. He would fret. He believed that I would tell everyone how stupid he is because he got a math problem wrong.

I always thought he was fine academically. I never worried about the homework in his backpack so much as him throwing up before school because he couldn't stomach going. I never worried, that is, until I sat next to him day in and day out and discovered how wrong I was. When the cloud cover of anxiety is lowered, he can do much better of course, but there was still something... off. It turns out that "something" was learning disabilities. But wait, he has autism. And ADHD. And adrenal dysfunction. And... what was that last diagnosis? I had been so focused on all of that that I missed the forest for the trees.

So I got to work on seeing the forest again. I once again had to step back from all I knew and had to make my own way. I remember one of the first days trying to teach Rowen what a noun was as he screamed with tears in his eyes.

But you have to know this! I thought. It is, after all, a second-grade level book and therefore you must start here and know all of this right now! See, it says right on the cover... SECOND GRADE!

It was a defining moment for me. Forget nouns when this kid struggles so hard to read that he wants to kill himself. So I said bye-bye nouns and hello to my child.

So we went back in time. We pulled out all our first grade artillery to get him comfortable. To get him to hate the process a little less. Dare I say, to love learning? To build him up into the kid that doesn't have to hate himself just to tell me what a noun is. To be... Rowen.

I am happy to say that the journey already looks different. He has built back up to where he can randomly say to me, "Mom, I think I love myself now." How 'bout them apples? Forget nouns, I see confidence. I see grace. I see Rowen.

It's not perfect. I am not Mary Poppins or Mary Tyler Moore. Some days are still really tough. But we are making it work.

And don't fret because I did come back to nouns just last week. We made it back there, but this time with a kid who reads to me well enough that I had to ask yesterday if he skipped pages because he zoomed through it without even asking for help. A far cry from me sitting next to him and lining every word with my finger just so he could stick to it.

So what is a noun, Rowen? A person, place, or thing. And what do you think about that? I think I love myself.

But for the grace of God we are here. I hope it sticks, although I do hope Starbucks never goes out of business.