10/09/2026
TODAY is PANS/PANDAS AWARENESS DAY
Thank you to Grace and her mom for trusting me with her PANS AWARENESS SHIRTS
💚 PANS AWARENESS — GRACE’S STORY💚
Grace’s story started when she was just 4 years old.
She had been playing in the woods with her dad while they were setting up a zip line. While they were out there, Grace was bitten by nine deer flies.
That same day, Grace suddenly couldn’t walk.
The following day, she developed an extremely high fever and was brought to the doctor. At the time, no one knew what was causing it.
Then came the rash.
We had multiple trips to emergency, and during two of those three visits, we were told the rash Grace was displaying was ringworm.
But that explanation never sat right with me.
Grace shared a bed with her younger sister, yet her sister had no rash or symptoms. I questioned whether we wouldn't be seeing it in both girls if ringworm was truly what we were dealing with. Grace's rash also wasn't confined to one area, it was appearing across her body.
Something wasn't adding up.
Eventually, Grace was seen again by our family doctor, Dr. Hall. He looked at her and immediately suspected Lyme disease. He started her on antibiotics and sent her to dermatology.
Because she had already started antibiotics, there was some question about whether her Lyme testing would even come back positive.
It did.
Grace had Lyme disease.
We thought we had an answer.
What we didn't realize was that this would only be the beginning of a much longer story.
# # # 💚 THEN OUR LITTLE GIRL STARTED TO CHANGE
At first, when Grace’s behaviour began changing, we thought she was simply getting older and becoming more assertive about what she wanted.
But gradually, our meek and mild little girl with the silliest side started becoming a child we didn't recognize.
By Kindergarten, the changes were impossible to ignore.
Grace had become extremely explosive. Her reactions were intense and completely unlike the child we had always known.
It was particularly difficult when she was playing and interacting with other children. Her school guidance counsellor worked to have a teacher or EA paired with Grace to help keep her safe and supported when those explosive moments happened.
At the time, we were focused on getting through each day.
We couldn't yet appreciate how much those struggles would eventually affect Grace's ability to form relationships with her peers.
And we weren't the only people seeing these changes.
Dan, who plays a grandfather role in Grace's life and is also a doctor, knew this little girl extremely well.
He knew the meek, mild, silly Grace we knew.
And he could see that something had dramatically changed too.
Dan began reaching out to medical colleagues and looking into research coming out of the United States about what can happen following Lyme disease. He also connected with Dr. Alexander, Grace's paediatrician, as we all tried to understand what was happening.
We continued consulting with Dr. Alexander and searching for answers.
In our experience, finding information and knowledgeable providers in Canada who could help us understand what could potentially happen after Lyme was incredibly difficult.
So we looked further.
We read studies. We talked with medical professionals. We looked at information coming from the United States. We tried to connect the dots.
After six months of antibiotics during Kindergarten, our search eventually brought us to Dr. Bryan Rade, a naturopathic doctor who also works with PANS/PANDAS.
Grace underwent low-dose immunotherapy as we continued trying to understand what was happening inside her little body and brain.
We weren't chasing a diagnosis.
We were trying to find our little girl again.
Eventually, another important piece of Grace's complicated puzzle emerged:
PANS — Pediatric Acute-onset Neuropsychiatric Syndrome.
# # # 💚 THE YEARS THAT FOLLOWED
Grace continued growing and learning, but the effects of those struggles didn't simply disappear.
Friendships were particularly difficult.
For years, when Grace talked about friends, most of those relationships existed within the familiar structure of daycare.
Making and maintaining connections with her school peers was much harder.
By Grade 5, we knew we needed to intentionally help Grace build those connections.
Together with the school, we started putting supports around the times that were hardest socially.
That included check-ins before recess and outside time, helping Grace work through anything her brain was already stuck on before she entered an unpredictable social environment.
And slowly, something happened that may seem incredibly ordinary to another family.
Grace started coming home talking about friends.
Not just daycare friends.
School friends.
For Grace, that was huge. 💚
# # # 💚 UNDERSTANDING GRACE TODAY
Grace is now 11 years old.
She has been diagnosed with dyslexia and dysgraphia. ADHD has also been considered, particularly because of family history, and medication has been used to treat those symptoms.
But even that isn't black and white.
Her ADHD diagnosis remains inconclusive in the context of her PANS diagnosis because many of the symptoms can overlap.
For the past year, Grace has also been working with Pam Taylor, a psychologist who has become an incredibly important part of Grace's team.
Pam is helping all of us better understand what is happening — but perhaps most importantly, she's helping Grace understand Grace.
She's helping her recognize what happens when her brain becomes stuck, make sense of overwhelming thoughts and feelings, and develop tools to work through those moments.
One of the clearest examples is Grace’s intense fear of bugs.
For Grace, seeing a bug isn't simply:
“Ew! A bug!”
She can completely freeze.
She can become so consumed by that fear that she loses her sense of time and has very little awareness of what is happening around her.
Reassuring her that the bug is gone doesn't necessarily make it stop.
Reasoning doesn't necessarily make it stop.
Telling her she's safe doesn't necessarily make it stop.
Her brain is stuck.
Those are the things we're trying to help Grace understand and work through.
Because this isn't simply about finding the right diagnosis.
It's about giving Grace the tools to understand a brain and body that don't always make things easy for her.
# # # 💚 AND NOW WE'RE QUESTIONING ANOTHER PIECE
We're currently carefully working through Grace's medications and documenting what we're seeing.
Because of family history, ADHD has been part of the conversation and Grace has been treated with stimulant medication.
Now we're questioning whether that stimulant could be contributing to some of the increased symptoms we're seeing.
We don't know that yet.
We're watching. We're documenting. We're working with her medical providers.
We're trying to figure out what helps Grace — and what might actually be making things harder.
Because with a child this complex, not every symptom fits neatly into one box.
# # # 💚 THEN, TWO WEEKS AGO, EVERYTHING ESCALATED
The transition to middle school has been incredibly difficult** for Grace.
After working so hard in Grade 5 to help her establish peer connections and build tools that worked for her, suddenly everything changed again.
New school.
New routines.
New expectations.
New peers.
New social situations.
We watched Grace become increasingly stuck on things.
We used the tools we've developed over the years.
We used the strategies Pam has helped Grace learn.
We modelled them.
We reinforced them.
We tried to help her work through it.
And this time, nothing was getting her past it.
Then Grace experienced multiple vasovagal episodes and was taken to emergency.
This had never happened before.
It was terrifying.
Thankfully, the emergency physician who cared for Grace was EXTREMELY supportive and compassionate.
He listened.
He recognized the complexity of Grace's history and felt her PANS symptoms could potentially be contributing to what we were seeing.
Most importantly:
He wanted Grace to get the specialized care she needs.
# # # 💚 SO HERE WE ARE — STILL ADVOCATING
Grace's family doctor, Dr. Hall, has been trying to get her additional care.
But we've been told Grace needs to be seen through psychiatry here in New Brunswick before accessing the specialized care being sought through the IWK.
And as her mom, I keep asking:
Why?
Why another hurdle when there is someone at the IWK with a special interest in children with PANS who may be able to help us understand what is happening?
We aren't asking someone to magically have all the answers.
We're asking for access to someone who understands the questions.
Because while referrals are sent, appointments are waited for, medications are adjusted and systems determine where she needs to be seen…
Grace is the one living it.
She's the one whose brain gets stuck.
She's the one experiencing the anxiety and OCD symptoms.
She's the one whose body is struggling.
She's the one who has worked so hard to build friendships.
She's the one learning how to understand what her own brain is doing.
And she's the one working incredibly hard to hold herself together at school while we see how much she has been carrying when she gets home.
From that 4-year-old little girl playing in the woods with her dad, at the beginning of a medical journey none of us could have imagined, to the 11-year-old we are advocating for today, one thing has never changed:
Grace is still Grace.💚
Our meek, silly, loving little girl is still there.
We will keep asking questions.
We will keep documenting.
We will keep learning.
And we will keep advocating.
Because PANS awareness matters.
Sometimes what looks like “behaviour” isn't simply behaviour.
Sometimes ADHD-like symptoms may be part of a much more complicated picture.
Sometimes a fear that seems insignificant to someone else can completely consume a child's brain.
Sometimes something as ordinary as coming home and talking about a friend represents years of work and growth.
And sometimes there are far more pieces to a child's story than anyone looking from the outside could possibly know.
Sometimes a parent's most important words are simply:
“This isn't my child. Something has changed. Please listen.”💚
