Not So Lucky After All

Friday, November 5, 2021

Relapse is not officially what this would be called but the word fits the experience. Her mind and now her body, overcome. As a mother, helplessness is my undoing. I've kissed every boo-boo. I've tucked in every sleepyhead. I've hugged every fear away. I've stood between her and harm's way. I've swooped in and saved her from certain injury or death. I've calmed every worry, advised every problem, and made sure she has been okay. When she got sick so many years ago I figured it out when all the doctors had no clue. 

This time, there has not been a damn thing I could do to stop this. I have watched for 2 months, as the life she knows slips away. Severe PANDAS in all her glory has finally taken her due. We are no longer one of the "lucky" ones. We are no longer a mild/moderate case. We are in deep and at times I can not breath. 

I'm likely only writing because we've finally seen some signs of relief just this week. The relief comes from a dampening of symptoms, not from any real healing but it is welcome. I am busy lining up new specialists, making appointments, getting on wait-lists, scheduling additional testing, and working our way through a stepped up treatment plan one phase at a time. 

The darkness has been black as night. I can't write about it yet but I imagine if you've lost someone who was your breath, your beating heart, the experience and depth of that grief would be similar. The difference is, I can see her form, I can touch her sometimes, and I can hope that she will be back. 

What I can write about is how we are moving through this one and the clue lies in this very sentence; we. She says, "I, not we" and "my, not our."  At 12 years old she's differentiating now and letting me know she needs to own this somehow. HER grades. HER homework. HER doctors. HER illness. HER fight. She's letting me know this is not my battle. She's not completely there yet because she still needs me and because she is sick, but there is a shift. 

Differentiate. My struggle is and has from day one been letting go but at every single necessary step of the way I see and I do it. This will be one of the bigger letting go's but it will happen. I'll still fight like hell. I'll still be in it with her. But I'll be her teacher and she can now lead some. She chose part of her own treatment yesterday. Empowerment. 

My little girl is not so little anymore and it will do her no good to pretend that this isn't what it is. So I'll help her fight. I'll help her to heal. I'll help her to choose. Whenever I can, I'll walk beside her or right behind her. There will be times when I need to lead but it is no longer all I will do. 

She needs to find her own strength, hope, and love. 

Falling

Friday, November 5, 2021

Fall slipped in through summer's back door with no invitation. 

A distracted host, I whispered hello. 

And we all fell down.

Gray

Monday, February 2, 2020

Lots of gray. Happy, happy, side slammed by hysterics, worries, and a touch of ocd.

Super Monday was not so super. The half-time show last night was a bust. Something happened and although I saw it bubbling for most of the day the eruption still caught me off guard (how the hell does that still happen?).  I wasn't prepared for how bad it was and I wasn't prepared to help her - at least not for about 15 minutes. I tried to parent it out of her. Deny it. Consequence it out of her.

Finally, my senses returned and I embraced my PANDAS PANS Mama role.  I sat on the bed and opened my arms and she crashed in. Her tear streaked face looking up at me so helplessly, "Mommy I acted like a crazy person. I'm so ashamed."

 And I am gutted.

"No honey. You had a really tough time and I didn't help you with it. I'm sorry. It's okay. You're okay. I love you."

Honestly, THIS is what she has to carry? The weight on her shoulders must be crushing. ARGH!  How can this be her reality? Fine one day, a mess the next.

My god I'm so filled with anger. Shame overcomes me in those moments because I can't fix this. I have to figure something else out. This isn't working well enough for her.  Surrounded by friends with colds and flu mist vaccines (live shedding vaccines) the vitamins are not enough for her. She needs something more.

I'm just so angry. Sadness.

Strength. Love. Hope. (sometimes you fake it til you make it)

Bumping Along, Singing My Song

Thursday, January 23, 2020

I hate to write this post. I'm pissed off actually. She's been bumping along again since September (at least...I think...hard to remember).  Multiple flare protocols, upping this, reducing that. Breathing a denial-ridden sigh of relief when she has a good couple of days. Swearing and trying to contain my anger and absolute frustration when it's back.

This morning was scary. Clothes. Nothing felt right. In tears of frustration she looked at me helplessly. Yesterday a beautiful day at the mall. Normal. Mommy-daughter day, shopping and buying some new things. Comfy things. Happy things. Then - it's all bad. Bad. Bad. Bad.

I can barely contain my rage. I am so tired of fighting this for her. So tired of watching her struggle. Filled with worry for what this is doing to her psyche...what it has already done. The shame. The brokenness of it all.

Broken. That's what it feels like. Damaged and broken. Like myself. What to do. What to do. Today, I do not know.

It could be worse.

It was better. A year and a half of better. And now I scurry to try to catch up and get that "better" back.

I think it's too late. That bus has left the station and we're sitting here with PANS. That son-of-a-bitch PANS.

Embrace. Support. Love. Manage.

This is life. The only one she's got. Do better Mama. Do better.

Strength. Hope. Love. I'll pull her through.

xo

I got nothin'

Tuesday, May 14, 2019

Nothing has come of any of it. She's great. She's a moody preteen who just turned ten but she's typical. The little scares never materialized. No flares. No symptoms. Just little bumps in the night that turn out to be nothing but shadows. Shadows of a living nightmare that even the brightest days can't drown out.

So we are cruising.  Cruising through 4th grade. Headed towards an amazing summer. Loving life and health. Talking about hormones, boys, and life lessons. Talking about how to cope with disappointments instead of OCD. Talking about being a contributing member of the family instead of trying to talk her down as she crouches terrified on her headboard.

It's incredible. She's incredible.

Strength. Hope. Love.

Something's Brewing

March 2, 2019

Well we've had a great run. I can't remember the last bad flare we've had. I found an old post from August that stated we had had a few great weeks so I know it's been at least that long. Now we're getting somewhere. 

I thought when things got better I would see it coming. Thought I'd know. Figured I'd be able to point to some new treatment or strategy and say, "Yes! This is what is going to make a difference. Found it!" and then I'd get to watch her health reveal itself in all it's glory. It wasn't at all that way.

I only knew her health had improved when I looked back. As each month passed without a flare I began counting - 1 month, 2 months, 3 months, 4......five potato, six potato, can we get one more?

Oh I'm NOT cocky though. No way. No one who has lived this life would dare. Oh in the beginning I was. Poor, naive, PANDAS PANS Mama.  "Hey everyone! I can't believe all she needed was a simple probiotic! She's been perfectly healthy for weeks! Can you believe it? All this time and a little gut health made it all go away"  Crash! Bang! Boom! And all the queens horses and all the queens women, couldn't put my child back together again. I probably fell off that wall a few times in all honesty. In fact, this may be the first time I've been humble and super quiet about it. Haven't even written many blog posts about it.

So, this has been an unusual time. Quietly taking it day by day. Working through some rough spots because it hasn't all been sunshine and roses. We'll have a couple of nights here or there when fears and a touch of OCD come to play. A weekend here or there when she's super agitated and emotional. The first few times it happened I panicked and threw everything from my flare protocol at her. Each time she was better within a day or two.

Only recently did I start letting her try to work through these bumps without too much intervention. Maybe just a little extra immune or allergy support.
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Hmmmmm....I didn't see this coming.
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I was going to write about taking our nutritional support program to the next level to get her over a little hump she seems to be stuck at. I've noticed she's been more unfocused, hyper, sensitive, and having some fears and minor little OCD stuff. I was thinking I needed to get her going with a little more methylation support but now....

Oh crap! I haven't been giving her the whole flare protocol at the first sign of symptoms and NOW I'm seeing other stuff creeping in. Stupid. Stupid. Stupid. I did it again. Why do we keep trying to act like our kids have healthy functioning immune systems even in the face of growing symptoms.

Strength. Hope. Love.

p.s. don't get cocky

Look Away

Monday, January 7, 2019


I'm not sure what to say but I know if I start typing it will come. We have had a relative state of calm since some time in early September. Regular days of getting dressed and out the door to school. No crying or screaming. No intrusive thoughts or fears. Just a 9-year-old girl and her family doing life.

There have been days though. And a couple of nights. Fears surface and she pleads, "I don't want it to come back! What can we do? I don't want it to come back!"  Panic moves in quickly and I open the cabinet, scanning, calculating symptoms and likely causes so the correct supplement can be administered. A day later calm returns and there is no flare.

Three or four times this has happened. Once, it was two nights in a row and I was terrified but each time, things settle and we breath and we move and on and look forward. I consciously superficially forget. Block it out. Not now. We aren't there and I won't look. If we make eye contact it might rear it's ugly head so we turn away and look forward and keep moving. Quickly. Keep moving.

This morning it happened. Reminds me that it also happened once or twice over the last couple of weeks. Hmmmm. Well, I guess the hyperactivity has been there for quite some time too but that is nothing compared to the something we usually have. But this morning, socks didn't feel right. Couldn't get out the door. This morning was a flashback - screaming, begging me not to leave her inside. I told her sister I'd play basketball with her while we waited for the bus. "Sophie's Chose" not quite but I can relate. Let my little one know that she gets left behind anytime and anywhere her sister says? Abandon my big girl in the house, frightened and alone as I turn my back? I played basketball...I think. But then I was inside helping to loosen a sneaker. Those were too tight. Bag was too heavy. Socks were awful. Oh and now at age 9-tween, it's all my fault. That's a nice new twist.

So this morning I'm doing my calculations again. Front-end or back-end methylation? The B3 helps but maybe pushed something back to NOS or yeast or gluatamate or NRF2 or TH17. I don't really know what I'm talking about. I have my own issues cognitively. No long-term memory storage or at least no recall. It's almost as if I have to re-learn with every flare.  Basics are easy. A+B=C. Excess ammonia + moly or l-cit = mop it up.  Yeast overgrowth + difulcan + charcoal = relief. But maybe it's viral so we need more A, D, Zinc, C. Maybe it's histamine from a playdate with a friend and her cat. Some AS-Gold and bene might help.

Have I ever written about how tired I am? I shouldn't complain because we've had an AMAZING run. I'm not going to complain because I'll probably be punished which means she'll be punished and our family will be broken again.

Look forward. Don't stare it in the eyes. Back slowly away, no sudden movements. Quietly dust off a couple of sups. We're f.i.n.e. Just fine.

Peace. Hope. Love. (sometimes there is no strength but it will come when we need it)