Search

Let's Talk About PANDAS/PANS

Veronica
Jun 14
3 min read

This isn't one of my typical posts, but it's something that has been on my heart, and I felt led to share.

It's my thoughts and my heart in words, real and still so raw.

For those silently suffering, you are not alone.

Let's Talk About PANDAS/PANS

It’s an autoimmune disease.

They call it Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep or Pediatric Acute-onset Neuropsychiatric Syndrome.

It’s autoimmune encephalopathy. And it sets the brain on fire.

One moment, your child is fine. And then the next, it feels as if they're gone.

The flares bring an overwhelming wave of OCD or anxiety, and often so much more. Behavioral/developmental regression. Tics. Urinary problems. Depression. Severe separation anxiety. Sleeping difficulties. The list goes on. It looks different for each child, but one thing remains the same. It is acute.

The episodes come out of nowhere, intensely, each one stealing a bit more.

Until one day, you forget, and you think that this is your child. This disease. This chaos.

You do everything in your power to discipline and teach and train them up in the way they should go.

But something else is in control. Something far beyond willful disobedience or poor choices.

You reason and plead. You pray and you pray for the madness to stop, the pain to subside.

But you suffer in silence because to speak up means to be judged in the worst of ways.

Your child is just spoiled, they say. You’re a bad parent. You don’t discipline enough. If only you’d be stricter, spanked more, etc. Then it all would disappear.

Or worse: You’re just making excuses.

They tell you that you just need to push them a bit more. Some say that it doesn’t even exist.

They don’t understand. They have no idea.

If it was cancer or diabetes or something visible, they’d listen. They’d empathize. They’d have compassion.

But a brain on fire is invisible.

It leaves you lonely and isolated. Misunderstood. In survival mode, 24/7. Fearful. Never at rest.

Your life just stops. On a perpetual pause.

While others continue with their own victories and triumphs, you are battling each and every day. There are no extra-curricular activities. No extended vacations.

You’re surviving, holding on with everything you’ve got.

But you refuse to give up. You have no choice.

You have to learn. You have to educate yourself because most of the doctors have no clue.

So in the midst of the struggles, you must also battle the “experts.” You must educate them as respectfully as possible, because they stand to cause more harm than good.

You spend hundreds. . . thousands, in and out of offices and therapies, until eventually you find the ones that KNOW.

You cling to them, pulling together a team, anxiously awaiting the long wait between visits, hoping that this time, the treatment will work.

It may get worse before it gets better, they say, but you don’t have the capacity for “worse.” It can’t get worse. It’s already unbearable.

You pray and you plead, and you take it one day at a time, one hour at a time, one moment at a time. You bear the flames. You calm the fires. And you brace yourself for the next one.

It’s up to you to monitor and assess and try and reevaluate. It’s up to you to keep your child safe.

It’s horrific at times. Downright painful, watching your child suffer with no end in sight. . .

Until one day, you get a glimmer of hope, and then another.

You slowly see the light in your child’s eyes slowly come back.

It takes months and months, but they are there, clawing their way back, somewhat confused, somewhat traumatized. Never the same.

That, my friends, is PANDAS/PANS.

That is what families are suffering through, silently, many unknowingly.

And I’m here to tell you, it’s the worst nightmare you can think of.

But there is hope.

There is always hope.

Children can and do heal. They can get better. And they can make it back.

It begins with awareness, a diagnosis, an understanding that you are not alone.