Coming Over the Next Wave

This wave I know.

Was I expecting it again? No.

It has been forever since we have been here, and although it feels unfamiliar this time around, somewhere in me recognises it.

I know this wave.

We have been on the PANDAS journey since 2016.

It followed a severe strep infection and recurrent UTIs when Tuscany was eight years old, the UTIs themselves connected to a season at school where toilet breaks were withheld or punished. That is a whole other story. What I am thankful for today is that there is far more awareness of PANDAS and PANS in Australia than there was when we first began this journey. We read research coming from overseas. We looked for doctors willing to investigate. We did blood tests during episodes, not because we needed a piece of paper to tell us that our child had changed overnight, but because we needed clinicians to see what we were seeing.

There was a pattern.

Illness. Inflammation. Then dramatic changes in behaviour, fear and mental health and the onset could be incredibly fast.

Gone was our delicate little flower.

Suddenly we had a child terrified of her own shadow.

She couldn't go to the toilet alone.

She needed to see me constantly.

Sometimes being in the same room wasn't enough she needed skin-to-skin proximity to know I was there.

The fears weren't logical.

They couldn't be reasoned away and when you haven't experienced your child changing like that almost overnight, it is difficult to explain what it does to an entire family. The seasons I don't like remembering, there are parts of those years I don't particularly like revisiting.

They were some of our darkest days.

There were seasons of self-harm, sabotage and suicide watch and there were moments when I genuinely wondered whether this was going to be our life forever.

There was testing.

Bloods.

Urine.

Stool testing.

Appointments.

Six-week courses of antibiotics.

More appointments.

More questions.

And each time, we were trying to understand not simply what behaviour are we seeing? but:

What is happening underneath it?

One of the things that strengthened our suspicion that something physiological was contributing was watching episodes settle after treatment of infection.

Mental health does not exist separately from the body

It is one of the reasons psych nutrition became so important to me. We cannot look at the brain as though it operates independently from the rest of the body. Immune function, inflammation, infection, nutrient status, digestion, the microbiome, sleep, hormones, stress physiology and the nervous system are not isolated departments operating behind closed doors.

They communicate.

They influence one another.

They work more like an orchestra than a collection of solo instruments.

It means I believe we should remain curious about the whole person particularly when there is a sudden and significant change from a child's usual baseline. For us, further investigation eventually uncovered other pieces of the puzzle, including H. pylori. Piece by piece, we learnt more about Tuscany's body.

But we also learnt more about ours.

Because PANDAS didn't only affect her nervous system. It affected mine.

I want to be transparent about this because unless you have experienced what can feel like a Jekyll-and-Hyde change in your child, it can be difficult to comprehend how quickly it can pull you into survival too.

The unpredictability can cripple you.

What will happen today?

What will trigger something?

Is she safe?

Do I intervene?

Do I reassure?

Do I call someone?

Do I wait?

Do I fix this?

And with my own history of trauma, her alarm could very quickly become my alarm. Her nervous system activated mine,mine activated hers. Without knowing it, we could become caught in a cycle.

Hunter or hunted.

There wasn't much space between what happened and what I did next. Which brings me to this wave because this one is different. Years later, the wave returned and after years without a significant flare, something began changing again.

At first, we didn't recognise it, the fear this time centred around food. She became afraid that if she swallowed, she might choke and die. Initially we wondered whether something had happened while eating. Perhaps she had swallowed something awkwardly or frightened herself. But then it happened at the next meal and the next.

Every meal became an internal negotiation.

She was trying to personally will herself to eat while simultaneously wondering whether swallowing that mouthful might end her life.

Let that land.

Imagine having to convince yourself of your own safety every time you swallow.

Then she gave us words we didn't have when she was eight:

“My body doesn't feel like it should.”

“I'm not myself.”

And suddenly I realised something.

We know this wave.

But we aren't the same people standing in it.

The wave may be familiar. We are not.

I've spent the last couple of days wondering why this feels so different from previous flares, part of it, I believe, is age. Imagine experiencing a sudden change in your body as a young child without the developmental capacity or language to understand what is happening. There is simply: Something is wrong, I'm scared..

Now, as an older teen, there is greater awareness, she knows more about mental health.

She can describe sensations.

She understands autonomy.

She can tell me that something doesn't feel like her, but I think there is another enormous difference.

She already has tools and so do I.

Over the years we have supported Tuscany in many ways through appropriate health care, nutrition, therapy, support workers and the somatic tools she has learnt along the way. Her body has experienced difficult seasons before, but it has also experienced coming through them.

There is a reference point now for:

This feels frightening, but I have felt frightening things before and they have passed.

That matters.

This time, I'm not trying to argue with the fear, perhaps one of the greatest changes isn't Tuscany at all.

It's me.

When something happens suddenly to your child, the instinct to fix can arrive before you've even had time to think.

Convince them.

Correct the thought.

Make them eat.

Explain why they're safe.

Find the answer.

Make it stop.

But words cannot always convince a body that believes it is in danger, so this time, instead of immediately arguing with the fear, we became curious about it.

“Close your eyes.” “Do you get the same reaction when you can't see the food?””

“What feels frightening?” There was information there and not a behaviour to battle.

So rather than turning every meal into a battleground, we adapted.

Soup.

Smoothies.

Smaller, manageable foods.

Medical investigation.

Blood tests.

Speaking with her treating team about infection and appropriate treatment and supporting nutrition where we can. Alongside that, using the familiar tools already in our backpack tapping, sensory awareness, somatic practices and the frequency tools we personally use.

As supports while we navigate it.

This flare isn't easy, I'm not pretending it is and we are still investigating. We don't yet know exactly what has triggered this wave or how long it will last and when there is a history like ours, you never completely dismiss what a flare could become.

But something important is happening.

Neither of us is allowing the whole system to go into overdrive.

She becomes afraid.

I don't have to become afraid because she is afraid.

She struggles.

I don't have to immediately remove the struggle.

I can stay beside her.

Observe.

Listen.

Adapt.

Seek appropriate help.

And trust the tools and capacity we have spent years building.

It means intervention no longer has to come from panic.

There is a pause where there wasn't one before and perhaps that is one of the things we misunderstand about healing.

We expect healing to mean the wave never comes again.

Maybe sometimes healing is discovering that when it does you meet it differently.

I'm sharing this for two reasons. Firstly, because another parent may be watching their child change and wondering what on earth happened, particularly where changes are abrupt, severe or appear alongside or following illness, it is worth seeking appropriate medical assessment rather than assuming every behavioural or psychiatric change exists independently of the body.

Sometimes behaviour is communication.

Sometimes fear is communication.

Sometimes the body is trying to tell us something before anyone has the language to explain it,

Secondly, I want to share the wins not just the dramatic before-and-after wins.

The quieter ones.

The ones that look like sitting beside your child instead of panicking or changing dinner instead of creating a battle around it.

A teenager being able to say, “I'm not myself.” A mother noticing her own nervous system beginning to rise and choosing not to follow it all the way into survival.

Knowing when the tools in your backpack are enough for this moment and knowing when it is time to reach for professional help.

I hope and pray that one day Tuscany's immune system will no longer respond to being compromised in this way. But today I am recognising something else. The goal isn't only to never encounter another wave.

It is also to build enough capacity, understanding, support and awareness that when a wave comes, it doesn't automatically sweep everyone away with it.

This one I know.

I didn't expect to meet it again and perhaps I would have preferred never to, but standing here now, I can see something I couldn't see all those years ago.

The wave may have returned.

But we haven't returned to where we were.

We are meeting it with years of understanding behind us.

With language we didn't have.

With tools we didn't have.

With a pause we didn't have.

So for now, we aren't trying to conquer the whole ocean.

We are simply taking each day as it comes.

One meal.

One conversation.

One investigation.

One moment of regulation.

One wave at a time