I know you love your child. I know I love my son. He’s incredibly bright, caring, and perceptive. And even at 6, he can already whoop me in a game of chess.
But.
Some days raising a PANS/PANDAS child can feel so lonely, so defeating, so kick-in-the-gut hard…
That it can be easy to forget there’s an amazing kid inside that body, held hostage by a vengeful disease.
In my previous blog post, 5 Things Every PANS/PANDAS Parent Needs to Hear, I asked myself… what would I have wanted someone to say to me when this whole journey started?
And by the time I was done, I couldn’t stop at just 5.
So today I’m back with 5 more. I hope they encourage you, and you take them to heart.
1. No, You’re NOT Crazy
At first, I debated putting this point in here. Will they think I’m insulting them?
But as a Pans or PANDAS parent, I’d put all my money on the fact that yes—this disease has made you feel crazy. Probably multiple times.
Every time a doctor tells you the disease doesn’t exist…
Or teachers talk about how you could fix everything with “more discipline”...
Or you get totally shut down by friends and family when you talk about you’re going through…
Or your raging PANDA throws a hardback copy of “Curious George” at your head…Yes, it’s easy to feel crazy.
I mean, have you ever had a child try to jump out of a moving vehicle simply because you couldn’t stop the literal sun from touching the skin on his left elbow? (On second thought, maybe you have.)
Now, I’m just one person, and all I have is my experience. But even though I’m a generally level-headed person, I have NEVER felt more coocoo-bananas-crazypants than in the last two and a half years since this journey began.
So give yourself a break—and stop wondering if you’ve gone crazy. What you’re dealing with is enough to make you feel like it, but no. You’re going to make it through, and with all your brain cells in tact.
2. Survival Mode Parenting Is Not Regular Parenting
Every parent gets unsolicited advice, but for PANS/PANDAS parents, it’s like people are waiting to jump out of the bushes and rush parenting tips at you.
I once had a stranger yell at my son… from his house half a block away… alllllll to the park we were standing in the middle of… that someone needed to teach him “not to hit his mom.”What’d he do? Hit harder, of course.
Believe me, if I COULD have taught him that lesson, it’d be taught.
Now, I agree that he shouldn’t have been hitting me. I don’t agree that the man’s shouted advice was helpful. I also don’t agree that my son was able to control himself in that moment.
That’s the thing, though. Literally everyone is an expert at parenting a PANDAS child… Just ask ‘em. They’ll give you all their advice for free.
The only person who ISN’T an expert at parenting is the PANDAS parent.
Because they know those freakin’ disciplinary hot tips don’t work. Like, at all.
I hear from a lot of parents in the P/P community that their attempts to use regular parenting styles just don’t work for their kids. Often, it makes things worse.
I’ve experienced the same thing with my own son.Why? Because you can’t discipline away brain inflammation. Raising a P/P kid means you have to change your tactics. It’s all done in survival mode—like guerrilla warfare, only it’s guerrilla parenting.
In the rules of war, the only rule is: do what works.
If screen time is the only thing that keeps intrusive thoughts at bay, we use screen time.
If their only safe food is chicken nuggets and they literally can’t stomach the thought of anything else, then it’s chicken nuggets, 24/7/365.
Their brain is sick. But when they CAN do better, they WILL do better. Until then, we P/P parents are forced to throw “good” parenting advice out the 2-story window. So parent the way you need to until you don’t need to.
Remember, rules are different in survival mode.
3. They Can’t Judge You ‘Til They WAS You
Not grammatically correct. Don’t care.
Listen, I don’t know about you, but I have struuuuggggled with this one. I admit I’m wired to be a people-pleaser. And for quite a while, my son’s behavior hasn’t pleased people. 🤷🏻♀️
When he started acting out of control and I couldn’t rein him in, I could feel the judgment in mah soul. The rolled eyes and the whispered comments and the looks of shock when my son started inevitably acting out wherever we were... it was a weight that I dragged around constantly.
I started dreading every holiday, every family party. My stomach twisted into a tight ball before every school day, because I knew what kind of faces the teachers would give me when we arrived—my PANDA kicking me up to the front door, and then turning it to them as he walked inside.
Even thinking about it now (two years later), it’s enough to make the tears well up.
At that point, I didn't have a word for what we were experiencing. Except for one: hell.
And that’s the problem. At some of our lowest points—when I needed acceptance and understanding more than anything…
All I felt was judgment on every side.
It was because I “wasn’t good at discipline.” I was letting him get away with everything.
The message was very clear: his issues were MY fault.
It’s NOT Your Fault, So Don’t Believe the Lie
What they didn’t see was all the things that WEREN’T behavioral. Like the entire summer where he shrieked in absolute terror if a dog got close…
Or how he’d have to go back and correct himself if he accidentally stepped on a crack in the sidewalk, wailing if he couldn't get it right. I KNEW there was something going on with my child that went far beyond “oh, he’s just a brat.”
But those people didn’t.
See, everyone sees your snapshots—they catch a quick glance at your struggle and form an opinion. You’re the only one who sees the whole picture.
So if you’re dealing with harsh criticism or whispers of gossip, I know it hurts. But don’t let their criticism make you doubt yourself.
PANDAS is almost impossible to fathom unless you’ve lived it, so you can’t really blame them for not understanding. Just keep doing what you’re doing and walk on.
4. It’s Okay to Do Learning at a Different Pace
And by “okay,” I mean… “often necessary.”
Of course, every child with PANS or PANDAS will be different, but for many, regressions are a big part of the disease.
And that’s in all kinds of areas, depending on the child. Regressions in handwriting, in math, in social skills, in cooperation, in maturity, in emotional resilience, and even in the willingness to learn.
Put those things together and it becomes a recipe for school refusal: another trademark of P/P.
(I swear, sometimes it seems like someone said, “Hey, let’s make a list of all the things that would make parenting WAY harder!” And then they took that list and created PANDAS.)
Anyway, the point is that our kids often can’t learn the way other kids can learn. And that’s okay.
Just like discipline, learning has to come in a way that works with and for the child. And maybe they’re not able to sit down and do any schoolwork at all. That’s okay, too.
If you can homeschool, try to offer light learning opportunities that don’t look like learning opportunities—whether it’s through cooking, sounding out names of Mario characters (a personal favorite of ours), or getting out in nature.
If your child is in school, see if some accommodations can be made. IEPs and 504s are made for this exact purpose. It’s very possible you can create a school-day that works better for your student, the teachers, and yourself.
5. You WILL Get Through This
About a year ago, I was at the park with both my sons. I walked up to the playground equipment, kicked at a few pieces of mulch with my flip flop, and watched my kids play.
By that time, I’d grown really used to that sadness of watching my older boy veer off by himself, wary of the other kids, looking sad and solitary as he walked around the brightly-colored equipment.
You might know that sadness too—this mix of a thousand different emotions that all culminate in me WISHING I could help him live the life he deserves.
I was drowning in that sadness when I heard this thought in my head…“It hasn’t always been this way, and it won’t always be this way.”
Whatever your thoughts are on God, it felt like he was speaking right to me. It almost made me cry right there at the playground, and it makes me want to cry now. It’s a realization, a promise, and a battle cry all in one.
The Hard Road to “Better”
Like most of us, I could tell you when my son “fell off the PANS/PANDAS cliff.” I could tell you the timeframe he switched from this to that.
But if it’s a cliff, then we WILL put one foot in front of the other and climb back up the rocks to the top—together.
Even if it’s a long, slow climb.
Because if there’s anything that P/P has done for me, it’s made me stronger. My son’s still gaining back that fortitude, but I fully believe he’ll come out stronger too.
It’s a conviction I have, even as we “walk through the valley of the shadow of death”...
It hasn’t always been this way, and it won’t always be this way.
And I believe the same for you, too. Much love.
