Saturday
Jan292022

I CAN SMILE AGAIN

8 years ago, I was diagnosed with PANDAS

7 years ago, I wobbled on my feet

6 years ago, I moved forward with my life

5 years ago, I realized why I was different

4 years ago, I didn’t let it break me

3 years ago, I kept the smile on my face

2 years ago, I lost myself and everything I knew

1 year ago, I started the long road to recovery

Today, I can smile again

 

Peyton T., teenager overcoming PANS/PANDAS/Lyme

 


Sunday
Dec202020

A Christmas Flare

A Christmas Flare

Twas the night before Christmas 
And all through the house
A creature was stirring 
A PANDA, not a mouse 

The melatonin's not working
On this, of all nights
I've tried Calpol & Brufen
but still sleep she fights 

When she finally nods off 
I drop down and I cry
So much of the magic 
Has passed my girl by 

No winter wonderland
No Christmas fayre
No parties, No pantos
All lost to a flare 

Amoxi, Nystatin 
Fluconz and Azith
In these little bottles
A shred of hope lives 

But the cause goes much deeper 
In our little ones
Snps, autonomic 
Histamines and neurons 

So I wrote to santa
And asked for a gift
For a paed and a neuro
Who won't cause a rift! 

"It's so controversial"
"It's really quite rare"
How much more of this bullshilt
Can we really bare? 

The doctors won't listen
No treatment for us 
But if this was their child
Then they'd soon make a fuss 

Ocd tics and miso
All wrapped up in fear
We hold on to the hope
She'll be better next year 

But tomorrow is Christmas 
And I'm sure we'll be fine
As long as my glass 
Stays full up with wine 

The in-laws are coming
So I must be polite
One "She'll grow out of it" comment 
And there'll be a fight!

I'll paint on my smile
Count to ten when they say
"It's all bad behaviour"
"You made her this way" 

The big Christmas Dinner 
That my girl won't dare touch
Just Quavers and Pommbears
Will be her Christmas lunch

I'll escape to the garage
With CAMHs dartboard and wine 
And dream of a Christmas 
Where things are just fine 

So over this Christmas 
When you need a friend near
Just try to remember 
You have 3000 right here

To you all, Merry Christmas 
Let's push on with our fight 
To raise pp awareness 
And yes ....CAMHs are shite!

 

Louise Ward

Louise Ward is fighting for treatment for her young child who has finally been diagnosed after a 2.5 year struggle. As of December 2020, PANDAS/PANS is not treated--at all, or well, in many countries.

Monday
Mar162020

surreal

by Stephani Pheffer 

All is closing down. The grocery stores have numerous empty shelves. People appear to be panicked and hunkering down like never before. Our schools have been canceled for 1 month, at this point. Social distancing in play.
This is a re-set on our modern, auto pilot of a life. We are being called to level up, to reboot, upgrade our OPERATING SYSTEM.
The coronavirus is saying “this is happening for you, not to you”.
Which wolf will you feed?
Being shaken to our core and paying attention like never before. Ever!
Our modern lives that we consider to be “our norm” have now been disrupted. The ripple effect will cut across large issues down to mundane daily events. Issues will arise that we aren’t yet aware of.
We are being given permission to grow locally and globally.
To question what really matters in life.
To take our power back.
To re-set new habits and patterns.
To develop more GRIT.
Steady hands on the wheel of our lives.
Some are up for the challenge, some may be devastated by it.
All in. What choice do we have?
I suggested to my daughter that some will be housebound and healthy and will choose to binge watch NETFLIX. Not me, I recommended that she set some spiritual goals to develop herself vs. waste this precious life altering opportunity.
Goals as simple as be in the moment.
Savor the wiggling of your toes.
Dance naked.
Inquiry and Radical Faith.
We’ll see. I have my goals set.
Whether you believe in the archetypes of religion, Star Wars or the Matrix, or even Astrology,
Choose Love not Fear.
Don’t feed the demons.
One breath at a time.
We got this.
Tuesday
Feb042020

PANS/PANDAS: Up Close, Raw & Real

by Rachel Love Cohen

Warning: raw and real. Don’t go here if you need sunshine and roses.

It has gotten so bad. He is fed up with the supplements, remedies, medicines, and diets. The new homeopathy isn't helping. The alternative medicine isn't working. The pediatrician doesn't think it's her job to help. We have already spent three years working with the functional medicine doctor, so clearly that hasn't worked. The THREE immunologists don't know why, and the TWO gastroenterologists don't know why. The neurologist says it's autism and OCD and that's just the way he is.

But it ISN'T JUST THE WAY HE IS!!!!

Because I've spent months at a time with my real child. He's sweet and gentle and loving and thoughtful and deep and intelligent. He doesn't kick me and poke me mercilessly; he doesn't swear at me or tell me he hates me, or that I'm a bad mommy; he doesn't look at me with a satanic, demonic glare and get told by the big boys on the playground that he acts like a criminal and he should have tattoos inked all over his face. He doesn't compulsively wash his hands 15 times a day or ask me to touch everything that he touches. He doesn't obsess over thinking about the swear words he knows, or point out every word that people say that rhymes with a swear word. He doesn't physically and verbally attack his sisters and dad, or find fault and RAGE over every. single. thing. that happens every. single. second. No. Not so long ago, he enjoyed being alive.

Autistic children don't have months of being completely unaffected / neurotypical, and then regress overnight into autism, and then become neurotypical again - over and over on repeat. 

Kids with #PANS and #PANDAS do. 

But during this most recent flare, I've been told by multiple practitioners (in both the conventional and the alternative healing world!) that PANS isn't real. I've been told by his teacher to get him into therapy and work on behavior and to accept that this is who he is. I've had my mother-in-law, who hasn't engaged with us about our children's health, ever, write us a letter and tell us we are too difficult to have in her life, and she can't see us anymore.

But we're used to that. I don't have enough fingers and toes to count the family members who've turned their backs to our suffering. These are the ways a PANS caregiver is gaslighted. These are the actions of others that, when added to an already monumental load of fear and shame and guilt and hopelessness, make me wish - for a few fleeting moments - that I could end my own life. 

Because how can a mother live in a world where her own child's illness is not only invisible, but is medically delegitimized, socially degraded, culturally invalidated, and straight-out ignored by most of the humans she knows? And how can a mother go through this not just with one child, but with three? 

For 12.5 years, I've lived in a vacuum.

A space from which air has been completely removed.

A hole left by the loss of human beings able to relate to my reality.

A void that seems only to grow darker and emptier as more family members and friends choose to drop us and as more experts and authorities discredit our lived experience.

If you've read these words and you're not able or willing to handle the message, please PLEASE do me the favor of unfriending yourself. This is my #truth and I'm not sorry you're offended.

***

A special thank you to Rachel Love Cohen for permitting us to reprint her words. She speaks for many of us and her son belongs to us all. 

Tuesday
Jul162019

PANDAS Won't Win

PANDAS
So you thought you won.
Think again.
So you thought you stole her childhood.
Well you didn’t.
You thought lurking in the shadows, hiding in the corners would make us scared.
You were wrong. We are stronger than you thought.
We cried, we screamed, we teetered on the edge of our sanity.
But we have triumphed and will not let you steal anymore precious time.
Our patience was tested, our family divided
but we overcame.
We are stronger because of you.
We are smarter because of you.
We are advocates because of you.
We are educators because of you.
Six years later
and everything you thought would happen
didn’t.
We are warriors
and my daughter has more purpose now than ever before.
She will make a difference
so never think you will win again.

Jaime Heizler Tan

  

๐Ÿ˜