Say Hello to my Little Friend

You'll do anything for a sick child. 

I know our homeopathy journey may seem like a crazy leap of faith, insanity, or whatever to some, but trust me when I say that we've tried everything and look where it got us. 

Nowhere. 

But really homeopathy isn't as crazy as it might seem. Maybe we've been using its principals a lot more than you'd think. Like cures like. Hmm, sounds a little familiar when we start talking vaccines. 

I promise I won't digress there too much, but think about it. Putting diseased tissue in its most weakened form into our bodies revs up the immune system and gets those antibodies flowing with guns ablazin'. 

That's what homeopathy is. It introduces pathology of some form into the body, whether it is from diseased tissue or nature itself, to pump up the immune system. So hopefully that dials down my crazy enough for you to see the connection there so I can share the latest in our PANS/PANDAS journey. 

I've mentioned before that when P/P kids get sick they don't show normal signs of illness (e.g. fever, runny nose, etc). Their immune systems are not working right, so what do you expect?

Instead, they "flare." That's our term for "the brain's on fire, and the revolution is about to begin!"

Last night my P/P kid started complaining about a stuffy nose. Nothing new there with allergies running amuck. You know...

I could feel the flare begin and readied myself to abandon ship, but there was a touch of something new. I looked at him and saw the face of a sick person. Stuffy nose, tired, glassy eyes... you know, miserable. It took me a minute, but then the AHA! moment kicked in! 

                    (Insert most famous 90s AHA! moment. She totally loved Josh.)

Could it be that the old immune system was working in proper fashion again?! Maybe just a scoche? 

Woo hoo! He's miserable! YASSSS, GIRL! Ok, you know what I mean there. 

I may be overreacting, but if you lived in our world you'd give me the benefit of the doubt. To add to my growing suspicion that homeopathy is helping, I've also seen the "fight-or-flight" dilated pupils MUCH less as well as a Bartonella lesion (that has been around for years) practically disappear. He also just seems to feel better overall. 

Thank God for homeopathy. I'm ready for more. 

Our Journey (So Far) With Homeopathy

We are smack dab in the middle of using homeopathy to heal our PANS/PANDAS son. I haven't penned a blog in awhile, so the quick and dirty of that diagnosis is the "brain on fire," immune system going haywire illness that you don't want to wish on Hitler himself. 

Ok, maybe I'm good with it on that guy. 

I realized this morning that, even though we are in the thick of it, I already have a lot of healing stories to tell, so why wait? I know what you are thinking: I already take all kinds of natural supplements or Yeah, I've already done the essential oils, thank you very much. 

I promise you, it's not that. In fact when I first learned about homeopathy, I was driving out of state to see the fifty millionth doctor for my son and I tuned in to a homeopathy doc telling me I could ditch the supplements and just do homeopathy. It sounded a little like an infomercial.

So I came home (again, utterly disappointed that the latest and greatest doctor couldn't help us) and did just that. I quit shoving a hundred supplements down my son's throat that weren't working anyway and started the journey with homeopathy. I floundered for awhile. I didn't get it. Seriously, this tiny white pillule can help? But let me tell you, after over a decade of trying anything and everything, some serious desperation hits deep. 

Homeopathy is based on the idea that "like cures like." Basically, the same substance that can bring on symptoms in a healthy person can treat illness with those same symptoms in another. It's based on the idea that the body can heal itself. Hey, if it's good enough for the queen? Oh, did I mention they eat this stuff up in Europe? Don't be fooled by the little box that American big pharma has put us in. 

Oops, I didn't see that little soap box coming. My bad. 

So now that you know, I'll actually share a quick story to whet the appetite. This one is about my healthy son so you know you can use it too. I'll get to the more complicated stuff later. 

When my younger boy gets a sore throat, he spends no less than a day or two in bed not uttering a single word or eating or drinking anything. ANYTHING. We communicate through miming for a few days. He throws up and his face blotches. Poor guy. 

The last three times he has started getting his usual symptoms, I put on my homeopathy hat and started dosing remedies. You have to find the right one to match symptoms, but let me tell you... IT WORKED! It's like we were waiting for a bomb to explode that NEVER did. He kind of hovered with very mild symptoms for a few days each time, but we never had to practice the art of miming. And that's just one of the many stories we already have that I would love to share because...

But that's for another day. Just hang on to hope, and let God's handiwork have life again. He created us with an immune system so let's put a little faith back in His good and wonderful gift. 

P.S. Just for clarification, we have had some great doctors along the way and I do love me some essential oils😉

Confessions of a Therapist

I've been sitting in the therapy room for 15 years now, and one thing is for sure. I learn a lot from my clients. 

I told the hubs recently that I do my best parenting in the therapy room. Not toward my clients, mind you, but the effort I put into helping them seems to morph into guilt that I might not be doing the same for my son. I guess the difference is that when the hour is up, I can step back and take a minute. There are no time limits in parenting a child with PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). 

I'm going to say and do all these things for him when I get home, is the usual mantra in my head every time I come home from my office. When I walk in the door, however, the illness smacks me in the face and I just retreat. 

Forget it. I give up. 

The song that often plays in my brain is Over My Head by The Fray. I know, I know, it's probably about 'boy meets girl' and said girl breaks said boy's heart. Some of you probably even hate it, but man oh man... Broken heart. Kind of hits the nail on the head there. Plus, this PANS stuff is often more than I can handle.

"Everyone knows I'm in/Over my head /Over my head/Eight seconds left in overtime..."

I've been in over my head since day one. And he's almost 14 now, so it sure feels like overtime here. 

I remember in my grad school days learning about the heavy hitters like the Freudian, Adlerian and Gestalt theories. You know, psychoanalytic, empty chair stuff. But then there was this guy named Carl Rogers. He said relationship is key. It can't be that easy though, can it? 

I thought of this while watching Good Will Hunting the other day. How many therapists did poor Matt Damon go through to get to Robin Williams? Five. No one cares how much you know, until they know how much you care. Maybe it IS that easy, but how many times have I failed at this in parenting? Especially parenting a PANS child that brings new meaning to the phrase Let's get ready to rumbllllleeeee......

PANS kids struggle with so many things, depression and anxiety being at the forefront. The least I can do is offer my own kid what I do others, right? But I'm human too. I have to sift through a lot of knee-jerk reactions in order to find the best response. And trust me, when you are under fire 75% of your day, you don't always choose the best response. 

So while I've gotten my Google degree in how to heal a PANS child, it's come down to something we are all built with. Factory settings, if you will. Relationship. No Google degree needed. 

Oh and one more side note here, especially if you have a therapist friend in your life. If you've ever wondered why they are so socially awkward, it's because we are. We feel much more at ease talking about your dead grandmother than chatting about the weather. We are used to the heavy lifting. The silver lining is that you can cry on our shoulder any time and we won't flinch. At least we have that going for us. 

For the Win

A year has already passed since we started a series of in-home immunoglobulin infusions that we fought so hard for. Eight, two-day long infusions later we are surveying any successes we may have had. So the million dollar question is did it help?

Drumroll please. 

Survey says: I think so. 

A bit anticlimactic, I know. But there's a bit of a twist to our story lately. 

Adding to my 10+ year Google medical degree, I had to search for more. While I do believe the IVIG helped tremendously (for which I am grateful), it still left us feeling like there was more we could do. Scrolling through Facebook several months ago, I came across a group for homeopathy. I always skimmed by that word, thinking it was more "natural," supplement-type stuff that we'd already been cramming down his throat for more than a decade. 

No thanks. 

But on a 4 hour drive to one of Rowen's appointments in North Carolina, I listened to a doctor describing what it really is. 

Ditch those supplements. Ooookayyy, I'm listening.

Like cures like. Huh? 

Substances that produce symptoms in one person, cure them in another. Ok, you lost me. 

In the world of PANS/PANDAS, you try everything. If you have something unchecked on the list, you aren't done. $600 out of pocket for the initial appointment? What the heck, these kids don't need to go to college I guess. 

Our first appointment was by phone and lasted about 3 hours. I spent that time telling the naturopath every symptom he's had for the last decade. Every. Single. Detail I could think of. He was so thorough, I didn't know whether to hug him or scream. You know what he didn't ask me? His diagnoses. Not once. 

But wait, I have a list a mile long of diagnoses! Don't you want to see all our labs we've drawn over the years? This kid has produced bucketfuls of blood in the name of diagnosis, for crying out loud!

So let me explain. 

No, there is too much. 

Let me sum up (when you get it, you get it). 

Let's say a healthy person is walking through the forest and sees some yummy looking berries. He eats them but later gets a major stomach ache, throws up, and is flat on his back for days. Let's say that another guy, Joe Schmo, isn't quite as healthy and actually has those symptoms already. Poor Joe. But when Joe eats those same berries, he's cured. Perfect sense, right? 

Maybe this will make more sense. Has anyone ever offered Mountain Dew to your kid who was in an ADHD tizzy? Same idea. Turns out, that person you wanted to throat punch wasn't as crazy as you thought. 

So this little $10 remedy arrived in the mail the following week. The first day we tried it, Rowen aggravated. That means he had a difficult reaction to the remedy. It was one of the roughest days we've had in a long time. Scary even. Believe it or not, that can mean we were on to something. Since then, we've noticed amazing changes in Rowen. He's calmer, less reactive, and his pupils have not been so dilated (always a sign of neurological disorder). Amazing. Thundercats are go.

Because I've had health issues for years, I figured I'd give it a go too. I'd gotten to the point of barley being able to eat without feeling like I wanted to crawl in a hole and die. I'd been gluten free for years, hoping that was helping some but still feeling horrible. I started my own remedy, and guess what? Holy pizza and bread batman, I can eat again. I feel like a human being again.

So maybe there is something to this homeopathy thing. Rowen is on month 4 and we just increased the potency. He flared on day one like he did last time, but we are already on our way back it seems. I'm so grateful, though cautious. There have been so many disappointments from "miracle cures" along the way, that I've become pretty jaded. The hubs tells me not to say anything good is happening out loud, because inevitably it changes. Kind of like that time I thought, "hmm, I haven't seen a Palmetto bug in the house in awhile," and within 15 seconds one promptly flew above my head. 

It's nice to feel hopeful again in the midst of a hopeless illness. Sooooo, homeopathy for the win. All gratitude goes to God though, because He is always my guide. And hope. Always hope. 

Standing Tall

Today was rough. It was one of those days where I could hardly speak without fighting back tears. I've seen Rowen go to some pretty dark places in his mind, but let's just say that last night takes the cake.

If you've never had to wonder if your child is going to make it in this life...

If you've never had to wonder if your child was going to wake up the next morning...

This illness is the most maddening, life sucking, tear provoking, hopeless, helpless, heartless... er, that may be the Clark Griswold in me talking...

Screw PANS/PANDAS. That about sums up where I'm at with this.

It seems it's my life's duty to save my child, but the maddening part is that I also don't know if I really can. It continues to leave me in this place of trying to let God, but wondering what I'm supposed to do as we go along here.

It's like that giant climbing tree in our backyard. You know the one. It's the one the kids love to climb up, sit in, and jump out of while I yell that they are most definitely going to blow out a knee.

A few years ago as a hurricane was passing through, I noticed the ground around that big tree starting to breathe. Its roots were no match for the wind. We scrambled around, even grabbing a neighbor to help us take the tree down if needed. Chainsaws came out and branches started falling, as Brenner worked to tie the tree to our SUV to pull it down.

My heart sank a little. That was the tree the boys loved. I hated to lose it. But just as we were ready to give the go ahead, the wind stopped. The tree was safe.

It's been standing tall ever since.

I can't give up. Oh, there are days when I want to, but I look at that battle scarred tree and think that maybe I can keep at this.

Tonight I laced up my new Nikes to go for a run, and darned if Tom Petty's "I Won't Back Down" didn't roll through my playlist first.

Well, I won't back down
No, I won't back down
You can stand me up at the gates of Hell
But I won't back down

So while that's probably my part, I can't forget about that stone that rolled away long before I became Rowen's mother. Jesus always makes a way, even if I can't see how. The Bible app also popped up on my phone today with this:

He hath swallowed up death forever; and the Lord Jehovah will wipe away tears from off all faces. 

I guess there's no need to fight back tears when He's there to wipe them away. We will keep standing tall and finding our way forward. His way forward.

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.