Sometimes I remember back to my first few months as a PANS parent (WAY before I even knew I was a PANS parent)... And I think about what that worn out woman needed to hear.
I was newly single, recovering from a C-section, caring for a newborn totally solo, and my dad and grandma had just died within a month of each other.
AND I was getting daily calls that my 4-year-old was suddenly hitting kids, headbutting teachers, and having complete meltdowns from everyday things, like his shirt got wet or he didn’t like the color of his Skittles.
I felt like I was teetering on the edge of an absolute breakdown.
Now, you’re probably not in that exact situation, but maybe you’ve felt the same desolation and crushing despair.
Maybe you’ve felt like everyday takes EVERYTHING you have to give, and you dread getting up tomorrow and giving it all over again.
Maybe you’ve sobbed in the teacher’s office and in the parking lot and on the car drive home… because you just don’t know how to fix what’s going on. If any of that resonates with you, then I wrote these reminders for you. I wrote them for you—and I wrote them for that desperate, confused woman I was 2 years ago.
It may not be much in the face of all you’re going through, but sometimes a little encouragement can go a long way. So here goes…
1. You Are NOT a Bad Parent (And This Didn’t Happen Because You Did Something Wrong)
I wish I could just reach across the screen and say this so you believed it:
You’re doing a great job.
Your child didn’t get this disease because you were bad, or because they were bad, or because you failed them. You didn’t fail them.
Research tells us it’s nearly always a bunch of things happening at once—whether it’s their genes, their exposures, their medical history, and even trauma and infections their ancestors struggled with. (Our genetic codes all carry pieces of our ancestry, after all.)
And not one of those is your fault. I know it’s easy to look around at all the other parents, and feel like you’re doing it totally wrong. For them, it looks they’re doing a great job, like they have it all together.
But parenting a kid with PANS/PANDAS is like trying to keep your head above water in whitewater rapids. It’s all you can to do breathe. To not go under.
And when you look over and see other parents floating in a nice, calm pool… you think to yourself, “Man, they must just be better swimmers.”
They’re not better. They’re just not fighting your battle.
So don’t judge your own parenting based on whether or not someone else is struggling as hard as you.
Real truth: this IS harder. And it’s not worth comparing. Give yourself some credit, this job is tough.
2. This Is the Illness, Not My Child
My oh my, if this wasn’t one of the TOUGHEST lessons for me.
Listen, when your own 5-year-old child looks at you and screams they can’t wait until you die—when they say they’d throw a party if you were hit by a car—that hits different.
In the last two and a half years, it’s amazing what kind of low-key horrifying phrases I grew numb to. It’s taken me so long to understand (and I’m still not quite there)... this isn’t him.
I sometimes think of it like that old-school PSA commercial: “This is your brain. THIS is your brain on inflammation.”
Because when he’s regulated, my son is gentle. He’s caring. He cares about right and wrong and he loves to scoop in as much learning and knowledge as his little brain can handle.
When he’s not regulated, he’s none of that.
Before I knew about PANS, I thought of it like Jekyll & Hyde. Now… I still do, actually. But I know the reason behind it.
Our bodies are incredible in their capability—but the balance is so fragile. Just that little bit of inflammation can make a gentle child rage.
A calm child writhe in full-body tics.
Or a carefree child morph into one that’s riddled with fear.
But that’s just the illness. Believe me, your real child is in there, too.
And THAT’S the one that’s asking you to hold on long enough for them to come back out again.
3. You Can’t Discipline Away Inflammation
Rewards, punishments, sticker charts, “coping mechanisms,” yelling, logic and explaining, therapy…
Ugh. Before I knew about P/P, I tried to reign in my son’s outbursts and defiance with anything I could think of. And nothing worked.
I had a mom sense that I was fighting something bigger than “defiance”—but you can’t defeat what you can’t define.
Our IEP for Pre-K specified we keep trying all the normal stuff, so we did. And the rages and triggers only got worse. More prolonged, more violent.
I remember asking one of the teachers. “What if these coping mechanisms just don’t EVER work for him?”
“Then we double down. And double down again,” was her answer.
About a week later, I pulled him out of Pre-K.
Listen, I didn’t feel like any kind of star parent at the time—but I do know the definition of crazy is doing the same thing over and over again…
And expecting a different result.
Even though I didn’t know it was PAN/PANDAS, I still knew there was something going on below the surface that was making it impossible for him to comply. That no amount of doubling down would solve.
Sometimes after his rages, he’d even tell me so. “I can’t stop. I don’t know how.”
Star parent or not, I got rid of the sticker charts, and loosened the reigns.
With fewer expectations, he was able to breathe a little easier, and we didn’t run into as many needless trigger points.
4. You Are NOT Alone In This (Even Though It Feels Like It)
This is an isolating disease, there’s no sugarcoating it. For a lot of us parents, we run away from the outside world and escape into ourselves.
Family doesn’t get it. Friends don’t get it. Teachers don’t get it. Sometimes doctors don’t even get it.
Add that to your child, who might be fighting you to even leave the house. And maybe you don’t want to leave either, because you’re scared of the exposures that wait outside.
Maybe you absolutely dread having another giant outburst at your sister’s baby shower or in the middle of the mall. Maybe people have stopped inviting you over because they don’t understand your kid’s behavior. Or they think you’re just “raising them to be a brat.”
Or maybe your neighbor’s don’t allow their kids to play in the same yard as your kid anymore. It’s all heartbreaking. But my sweet friend, you already know that.
What might be harder to remember is there are so many parents just like you. Living out the same heartaches.
And while we ache for those other parents, at least we can ache together. Reading about their struggles lets us know that although it may seem like it… We’re not the only ones dealing with these things.
In fact, my very BIGGEST joy in finding out there was a name for my son’s condition, was also finding out that we weren’t alone in the world.
That’s why I’m writing this blog. That’s why I’m sharing my story. Because there’s nothing worse than going through absolute hell—and feeling totally alone while you do it.
There’s an entire community of PANS/PANDAS parents out there. We’re on social media and we’re all over the map. I encourage you: get connected with us.
P/P may be something that can only be understood by those who have walked through it, but we’re walking through it. Believe me, we’ll understand you.
5. It’s Okay to Grieve For the Stolen Time
Those pictures of perfect families on social media. Your brother’s family vacation photos, with your niece and nephew splashing in the waves. Commercials with happy kids sitting around the table making gingerbread houses.
There are so many hard things about being a P/P parent, but sometimes the worst is knowing what’s possible—the everyday ease that other families are taking for granted—and feeling like those happy moments have been ripped away from you.
We get messages from everywhere about what parenting “should” be…
And for us P/P parents, we know our lives don’t look like fun songs and silly giggles before bedtime and magical Christmas mornings…
I know you imagined those “big firsts.” First days of school, birthday parties, and school dances.
If those “big moments” in your child’s life aren’t joyous, but hard, tear-filled, or even downright traumatic… Let me be the one to tell you. It’s okay (and necessary) to grieve those moments.
It’s okay to be angry that your life doesn’t look like everyone else’s. It’s okay to sit in your closet and cry ugly tears. (Well, maybe it’s just me who sits in the closet.)
It’s okay to wish things were different—that your life was different.
But please, don’t get stuck there.
Because There IS Hope for PANS/PANDAS.
You can say it as many times as you need to until you believe it: There is hope. There is hope.
And if you have a bad day… or month… or year… (I know it sounds like there should be a Friends reference here…)
Say it every night before your head hits the pillow. Say it so you believe it.
“There is hope. My child will heal. My child has a future. My child will turn this curse into a blessing—and help many others because of it.”
I once heard someone say that PANS/PANDAS kids are the ones that are going to change the world. And you know what?
The more I see these kids, the more I believe it. From great adversity comes great strength. So keep going, my friend.
You and your child will make it.
