Instagram story viewer> @celine__love> Posts

Celine | PANS Mom

@celine__love

2.6K

followers

269

following

healing my son from PANS after an autism misdiagnosis
homeschooling 3 boys on the space coast
winging the rest
✞

POSTS STORIES REELS

We almost missed PANS.

That’s still a hard sentence for me to sit with.

My son was diagnosed with autism, and once autism was written down, there was somewhere for everything else to go.

The rigidity. The OCD. The rages. The regression. The sensory issues. The anxiety. The things that were getting harder instead of easier.

It all had somewhere to belong.

And Forrest didn’t have the textbook story people tell about PANS. There wasn’t one morning where our perfectly healthy child suddenly changed. His story was messy. It started young. It built over years. By the time things became unbearable, we had spent so long living inside of it that we didn’t know how much we had normalized.

Then he started telling me that something was wrong with his brain.

Really think about that.

A child who had been given diagnoses to explain what everyone else could see was trying to tell us what it actually felt like to live inside his own head.

So we kept digging.

And we found PANS.

A medical condition with treatments.

I don’t know that I’ll ever get over how close we came to spending his childhood believing that every symptom was simply part of his autism and therefore something we needed to accommodate rather than investigate.

Because a treatable condition can be missed when every new symptom gets absorbed into a diagnosis a child already has.

That happened to my son.

And had we stopped looking, we still wouldn’t know. by @celine__love

I’m fine with being difficult.

I’m fine with questioning the experts.
I’m fine with firing doctors.
I’m fine with pressing for more answers when the first ones don’t make sense.
I’m fine with being the parent who won’t just accept “this is how it is.”

Because continuing to ask questions is how we eventually found PANS, a treatable condition that can cause significant neuropsychiatric symptoms and can be triggered by infections and other inflammatory triggers.

We could have stopped at autism, ADHD and OCD. I’m really glad we didn’t.

My loyalty lies with my kid, not anyone’s title, opinion, ego, or approval.

If advocating relentlessly for him makes me difficult, I can live with that.

____

PANS PANDAS Awareness | Lyme disease and co-infections | Bartonella | Neurodivergent parenthood | Functional medicine by @celine__love

The diagnoses may be part of his story, but they will never be who he is.

He’s not a list of symptoms.
He’s not a collection of labels.

He’s a little boy who deserves every opportunity to heal, grow, learn, and become whoever God created him to be.

And that’s the child I see when I look at him. 🤎

⸻

PANS/PANDAS | OCD | ADHD | Autism | AuDHD

Biomedical Healing | Medically Complex | Parent Advocacy by @celine__love

Good morning!☀️ by @celine__love

I wish someone had handed me something like this years ago.

Not a list of 50 labs to order. Not another rabbit hole to fall down. Just a starting point.

We spent years collecting diagnoses and trying to manage individual symptoms without understanding how many pieces of the picture could be connected.

And once I started learning about PANS/PANDAS, I had a million questions and very little idea who to ask.

What I’ve learned since then is that finding answers is rarely as simple as running one test or finding one doctor. Sometimes you find a practitioner who gets you part of the way there, and then you realize you need someone with different experience. Sometimes one test answers a question and creates five more.

Our own understanding of our son’s health has changed enormously as we’ve learned more, tested more and found better practitioners.

So if you’re at the beginning of this and staring at your child thinking, “I know there is more going on here,” this is the post I would have wanted someone to send me.

You don’t have to know all the answers to start asking better questions. 🤍 by @celine__love

An autism diagnosis is not a free pass to overlook a child’s health.

Regression, severe OCD, debilitating anxiety, restricted eating, uncontrollable episodes, GI pain, and neurological changes deserve medical investigation, not automatic dismissal as part of autism.

Too often, an autism diagnosis becomes the explanation for everything, even symptoms that would raise serious medical concerns in any other child.

Neuroimmune conditions, infections, metabolic dysfunction, and other medical conditions can produce or worsen many of these symptoms, yet they are not always adequately investigated.

Parents trust professionals to recognize when something more is going on. That trust becomes a problem when warning signs are dismissed by the very people responsible for recognizing them.

And this isn’t exclusive to conventional medicine. The functional medicine world is just as capable of overlooking serious conditions while cycling children through endless supplements and protocols.

Autistic children deserve the same medical curiosity, thoroughness, and urgency as any other child.

Their suffering deserves to be investigated, not normalized. by @celine__love

Bartonella deserves a much bigger conversation in the world of PANS and pediatric neuropsychiatric disorders.

When a child is experiencing severe OCD, rage, anxiety, compulsions, tics, cognitive decline, or regression, we need to be investigating what could be driving those symptoms.

And Bartonella deserves consideration.

Most people still associate Bartonella with cat scratch disease. What receives far less attention is its potential neurological and psychiatric impact.

Bartonella infections can involve severe neuropsychiatric symptoms in children, including presentations consistent with PANS.

We’re talking about profound changes in a child’s behavior, cognition, and emotional regulation occurring alongside an identifiable bacterial infection.

Bartonella can persist in the body and be difficult to detect through routine testing. Negative antibody testing doesn’t necessarily exclude infection.

Why are we so quick to focus on managing behaviors without giving equal attention to investigating the medical conditions that could be contributing to them?

These children deserve more than symptom management. They deserve thorough medical investigation.

Bartonella belongs in conversations about vector-borne illness, neurology, immunology, and pediatric neuropsychiatry.

And it’s a conversation we need to be having. by @celine__love

Some of the most dangerous words a parent can hear from their child’s doctor are “that’s just part of their autism.”

Because once everything is attributed to autism, there’s a very real risk that underlying medical conditions will go unrecognized, symptoms that deserve further investigation will be dismissed and children will spend years suffering from things that could have been identified and potentially treated.

We’ve come a long way in advocating for autism acceptance, but somewhere in that conversation, I think we’ve lost sight of how important it is to recognize when a child is struggling.

Accepting a child for who they are should never mean accepting their medical suffering as an inevitable part of who they are. by @celine__love

What happens when a bacterial infection produces symptoms that overlap with a child’s existing neurological or behavioral diagnosis?

It gets attributed to autism. That’s what happens.

Bartonella is a group of bacteria that can affect multiple systems throughout the body, including the nervous system, and cause neurological and neuropsychiatric problems. We’re talking cognitive difficulties, anxiety, irritability, regressions, aggression, and major changes in behavior. Things that can easily get brushed off as part of a child’s existing diagnosis.

Fleas are a major way Bartonella spreads and cats are the most common source of exposure. But something you might not know is that transmission from mother to baby during pregnancy is also possible. Our doctor and I suspect that may be how my son acquired it.

And here’s something I wish more parents knew- not all Bartonella tests are created equal.

Some tests look for antibodies while others look for the bacteria’s DNA. Bartonella can be incredibly difficult to detect especially when there isn’t much bacteria circulating in the blood. A negative test doesn’t always mean it’s not there.

Bartonella first showed up in my son’s testing years ago. We were told it was nothing to worry about, but it never completely left the back of my mind.

In March of this year, testing through Galaxy Diagnostics picked up findings involving multiple Bartonella species. This month, IGeneX testing came back with positive Bartonella findings too.

So this wasn’t just one random test result. We had evidence of Bartonella exposure and infection across multiple rounds of testing, years apart, all while his neurological and behavioral symptoms continued to get worse.

And I can’t help but wonder how different things might look today if those early findings had been taken seriously.

How many other children are having their symptoms attributed to a diagnosis while something treatable goes uninvestigated?

___

PANS/PANDAS | Lyme co infections | OCD | children’s health | functional medicine | medical journey | root cause | neurodivergent motherhood by @celine__love

Five years of searching, questioning myself, losing hope, and finding the strength to start again.

I wish I could get those years back. But I can’t.

My son is already almost 10. So much of his childhood has been spent struggling and I refuse to let what’s left of it be spent in misery.

He’s going to be healed. He’s going to be happy. And he’s going to have the freedom to just be himself.

And if our story helps another family find answers sooner, then sharing it is worth every bit of vulnerability. 🤍

__

beyond the labels | autism | adhd | ocd | pans | pandas | awareness | root cause healing | neurodivergent motherhood | medically complex | lyme | bartonella by @celine__love

As a Christian mom walking through this, I know God is forging me. I know He’s forging my son too.

I reject the idea that God gave us this suffering. We live in a broken world where sickness and suffering exist. But leaning on Christ is what has carried us this far.

I believe He can take what was meant to break us and use it for His glory. None of this will be for nothing.

So I put on the full armor of God and pray for the wisdom and discernment to make the right decisions for my son. I trust Him with what I can’t see yet.

I don’t know exactly what the road to healing will look like, but I know where we’re headed.

My son will be healed.

Who else is holding onto Christ with everything they have in this season? ❤️‍🩹 by @celine__love

How many children are still falling through the cracks?

How many parents are being told their child has anxiety, OCD, autism, ADHD, behavioral problems, or another diagnosis without anyone investigating WHY?

PANS/PANDAS can change nearly every aspect of a child’s life. And far too many families are left to figure it out themselves.

PANDAS is triggered by strep. PANS has a much broader range of triggers. For our son, Lyme disease and coinfections, including Bartonella, have been central to his illness.

We spent years watching our son struggle without understanding what was happening to him. Years of searching, questioning, advocating, and watching his childhood unfold under the weight of an illness we didn’t yet have answers for.

And we’re still fighting to get him the care he needs.

This is why awareness alone will never be enough for me.

Our children need physicians who recognize what they’re seeing. They need thorough investigations. They need access to treatment without their parents having to become experts, spend thousands of dollars, and fight for every next step.

Their childhoods are not on pause while the medical system catches up.

That’s what I want people to understand today. 💚 by @celine__love