PANS/PANDAS parenting is a trauma that is almost impossible to understand unless you are living it.
Outsiders may see a stubborn kid acting out. If they are kind, they might think that it is anxiety. They might notice the tics or a mild version of meltdowns. They might even pick up on the OCD.
What they don’t see is everything happening behind closed doors.
As a mom who has walked this journey, I can tell you that PANS doesn’t just affect the child. It affects the entire family.
Life Becomes About Survival
Before my daughter Avery recovered, our days weren’t ‘normal days’ anymore. They were about making it through. Every decision revolved around her symptoms.
My life became a series of questions. Would today be a good day? Would something trigger her? Would we make it through bedtime without another battle? Would I get more than a few hours of sleep tonight? Which version of my child will wake up in the morning?
Our family wasn’t living. We were surviving.
When I think back on those years, I now see that we were living in a state of shock. Everything had changed so quickly that I was constantly waiting for the next thing to happen. I never let my guard down.
If you’ve experienced PANS, you know that feeling.
Research Became My Second Job
Once the kids finally went to bed, my work wasn’t over. That was when I opened my laptop to spend hours reading research papers, joining Facebook groups, listening to experts, and searching for anything that might help my daughter.
Which, of course, meant that I wasn’t getting enough sleep, even though I desperately needed it. Spending your day battling OCD and meltdowns is exhausting. But the thought of this going on without end gave me the energy to stay awake into the early morning hours looking for a solution.
I wasn’t trying to become an expert. I wasn’t naturally interested in health and science. I was just trying to help my child.
I know so many parents who have done exactly the same thing. We weren’t researching because we enjoyed it. We were researching because no one else seemed to have the answers.
The Mental Load Nobody Talks About
One of the things Dr. Bahr and I talk about often is how overwhelming treatment can become.
Every provider needs regular appointments and has recommendations you have to follow. Supplements, diet changes, therapies. They need tests to see what is going on, and to see if the therapies are working.
Individually, none of those things seem impossible. Combined, they can feel crushing.
Especially when you’re trying to implement them while caring for a child who may not be sleeping, eating, attending school, or feeling safe in their own body.
There were days when simply getting everyone through breakfast felt like an accomplishment.
Finding People Who Understood
One of the greatest gifts during our journey was finding other parents.
Not because they had all the answers, but because they understood.
I didn’t have to explain why I looked exhausted. I didn’t have to convince them that my daughter had changed overnight. I didn’t have to justify why I was afraid.
They already knew.
There is something incredibly healing about sitting across from someone who simply says, “I’ve been there.” That’s one of the reasons we started our Homeopathy for PANS & PANDAS Facebook community and later the Mom & Doc Talk podcast.
Parents need education, but they also need community.
Parents Become Experts Too
One thing this journey taught me is that no one knows your child the way you do.
Doctors have medical training. Homeopaths have clinical experience. But you are the one living with your child every single day.
You notice the little changes. You see the patterns. You know when something feels different.
That doesn’t make you a replacement for a good provider. It makes you an essential part of your child’s care team.
Dr. Bahr often says that providers bring broad knowledge, while parents bring deep knowledge of one child. I’ve found that to be absolutely true.
If You’re Feeling Overwhelmed
If you’re reading this in the middle of your own PANS journey, I want you to know you’re not failing. You are doing a great job.
You’re carrying an incredible amount.
Some days you’re a parent. Some days you’re a nurse. Some days you’re a teacher. Some days you’re a researcher.
Most days you’re all of those things before lunch.
Give yourself grace. Keep asking questions. Keep learning.
And don’t try to do this alone.
I will never forget the families who helped me change my family’s life.
My hope is that we can do the same for yours.
