Running in Place

We are going nowhere.

I wish I could at least say we are going nowhere fast, but this is the most slow and painful nowhere I've ever experienced.

Ten years. Ten years, and we are still here. Maybe worse.

Misdiagnosed for a decade. Check.
Dozens of doctors and specialists. Check.
Hundreds of tests and labs. Check.
Expensive supplements that could put us out of house and home. Check.
IVIG treatment, the big one (or so I thought). Check.
A chronically ill and depressed child who continues to decline. Check.

Nowhere... slowly. Check.

We are always in the waiting. Waiting for the next doctor to call. Waiting for the latest lab work to come back. Every time thinking we will get somewhere, but the maddening reality of this illness is that we don't move an inch. It's like we are running in place.

I've gotten to the point where I don't care how far we have to go, we just need to start moving. I was recently looking all across the country for any doctor that could somehow help. I've looked at Arizona, New York, Washington DC, Florida, Ohio, North Carolina, and maybe more. We were able to wrangle an appointment with a doc relatively nearby that seems to think he can help. It will be a long day of driving 4 1/2 hours there and back just to see if that's at all true. But I don't care. It's pretty standard in our house these days.

My life has turned into one big waiting game. I was telling a friend that I actually get excited to see what the next test results might bring. Man, that's sad. But I guess it makes sense. I'm constantly waiting for a piece of the puzzle that will do it. The elusive piece that I've been missing all these years. And if you're wondering, I'm currently waiting on a lab that we shelled out $520 for to see if he has Lyme for sure, since the last 3 tests weren't good enough I guess. Sigh.

While I'm at it, I might as well spread the word about PANDAS/PANS. I keep thinking that I don't want this to happen to other families, while I secretly harbor the fear that it's already too late for us. I'm so fearful of the damage this has already done. The culmination of that fear was his recent MRI that showed abnormal results and lesions in his frontal lobe, likely from infections that have been lurking in his body all these years. I was probably shoving some unnecessary, $100 supplement down his throat while that was happening.

I'm tired. He's tired. I'm running out of cards to play here.

I will say that God planted a seed months ago that I need to be putting on His armor. The battle is not of flesh and blood, but of the Spirit. He's been hinting that for some time now, but has been too nice to just whack me on the back of the head like He probably should. So I'm trying to armor up; use what He's given me to fight. It's my humanness that stands in the way. My fear.

So I hope you will help us do just that, because we still have a long way to go and this battle is hopefully going... somewhere.

Wrong Again

We made it through our first IVIG (Intravenous Immunoglobulin) treatment a few weeks ago. What I'd been working to get covered since February finally showed up on my doorstep in the form of a an in-home infusion nurse and a whole lot of boxes full of supplies. Our nurse had driven in from Tennessee that morning because a local nurse wasn't available. I was grateful.

A few needle pokes (one that busted the vein and painfully shot saline right into his bloodstream- eek!), and Rowen was wired for sound. He had to get a bag of saline in his line before and after the infusion to ward off side effects. In all, it was about 8 hours a day for 2 days running all while pumping Rowen full of as much Gatorade and water as possible. He was a trooper though. Promising him an all day video game session wasn't a hard sell.

He carried the fluids bag around in a little black bag so he could be mobile around the house. We had sweet friends stop by with balloons to wish him well. All in all, it wasn't bad experience. The next morning, however, Rowen woke up with the worst headache he's ever had. It was so bad he threw up and nursed a pounding head the rest of the day. As hard as that was for him, it was much better than I'd expected.

If I said I didn't have my hopes up, I'd by lying. I hear so many say that IVIG was an instant turn-around so naturally my brain landed there. I saw nothing. In fact, he seemed worse. I knew that could happen too, but I was optimistically naive. Here we are three weeks out and I'm not sure I've seen a huge change yet. Maybe a little more mellowed out, is all I can say. I know I need to be patient, but after 10 years my patience has run thin.

I'm reading a lot about infectious causes and it's astounding. "Our bodies are not in symbiosis with organisms any more because our bodies are no longer in symbiosis with our environment" is something that resonates. The sad fact is that we are just in too deep. I know I'm a crazy conspiracy theorist, but forgive me if I don't have a lot of hope in our system right now. We are on denial number 4 for the IVIG through our medial insurance based on the fact that PANDAS and PANS doesn't really "exist." Thank goodness our prescription carrier stepped up and covered it for us. And speaking of infections, we have to dig to find them all. Unfortunately, we are just getting started. Because he's been diagnosed with strep and mycoplasma so far, this technically makes him a PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) kid. So we are dealing with PANS, not just PANDAS (strep). I was wrong again.

Many of you have asked when we will do another treatment. My lack of patience at this point has us scheduled for our second infusion next week. Thank goodness for that, but I don't know where we will go from there. I've been looking into treatment options in Arizona and New York. On top of all the supplements we buy each month and out of pocket doctor visits, it isn't financially easy. I just need direction, but that isn't readily available for what we are dealing with. So I continue to be the mom that spends a billion hours researching to come up with the next great thing. In the meantime, we will likely consider scheduling a monthly infusion to see where that gets us.

When I catch a glimpse of my boy (sans a PANDAS/PANS flare), it's all the motivation I need to keep going. And if I'm being honest, those moments where we are pushed to the edge because of this maddening illness are the times that also propel me forward. There have been many moments I've said "I can't do this anymore," but we always do, don't we? God doesn't let you have more than you can handle.  Well darn, He must think I'm superwoman.

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.