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.