If you have a child and haven’t heard of PANS/PANDAS, it’s important that you know.
The symptoms associated with this devastating syndrome are more prevalent than most realize.
Last week, I shared the story of my then 12-year-old’s battle with PANS (Pediatric Acute-onset Neuropsychiatric Syndromes).
Her sudden-onset panic, fear, and severe separation anxiety stopped our family’s life that summer.
We felt as though we had lost our daughter.
The joyful, fun-loving, social butterfly that we knew had been kidnapped by what we soon learned was a very common bacterial infection.
Mycoplasma or in layman’s terms, pneumonia.
You can read more about our daughter’s story here.
Bacteria Playing Hide & Seek: PANS
Here is my attempt to explain how a bacterium such as mycoplasma, which causes pneumonia, can cause PANS/PANDAS.
The symptoms that these bacteria and others cause includes drastic emotional or behavioral changes.
Basically, these bacteria (STREP or mycoplasma, for example), play Hide & Seek within the body.
They actually imitate the healthy cells within the body. They “hide” while pretending to be healthy body cells. In the time that these bacteria are hiding, they multiply in secret.
The invaders grow and grow until they are finally found by the body’s immune system.
Our immune system actually attacks the healthy cells that the infections have been mimicking in secret.
What Are The Symptoms of PANS/PANDAS?
Devastatingly, at that point, the child’s symptoms take a turn for the worst. This causes frightening emotional and behavioral signs:
- OCD (this can present as repetitive distressing thoughts)
- Anxiety
- Depression
- Severe opposition
- Aggression
- Handwriting deterioration
- Sleep disturbances
- Obsessions about food
- Hyperactivity and sudden ADHD-like symptoms
- and more…
Forced to Play A Game
This forces parents and doctors to begin the game of Hide & Seek. A game they did not know they were playing.
Adults finally seek out the cause of these severe changes in the child and then often find the bacterial culprit if the proper blood workups are performed.
Click here to access diagnostic workup of PANS/PANDAS information.
Please bring this with you to your doctor if you notice symptoms of PANS/PANDAS in your child.
Very often, doctors are not well-versed in the diagnostic criteria for PANS/PANDAS.
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STREP Bacteria & PANDAS
Specifically referring to the STREP bacteria, WebMD describes it this way:
An infection causes your immune system to attack your body’s healthy cells, in this case, cells in the brain.
Basically, strep bacteria disguise themselves to appear like healthy cells.
Once the immune system finds and fights them, it also fights healthy cells.
Journey from PANS/PANDAS Symptoms to Diagnosis
Today, Heather will share her story. She’s currently navigating this rocky road with her own son.
As she describes it, her son has the trifecta diagnosis of PANS/PANDAS and AE.
According to Epidemicanswers.org, AE, Autoimmune encephalitis is the umbrella term for PANS PANDAS.
It also includes any neurodevelopmental disorder such as Autism, ADD/ADHD, Sensory Processing Disorder and even learning disabilities.
Autoimmune encephalitis is a disorder in which the immune system attacks the brain, impairing function.
Let’s hear from Heather.
Behavioral Changes: Wrong Diagnosis
It was 6 years ago when my then 4-year-old started changing.
We were getting calls from preschool about behavior challenges they were having with him and thought it was best he be evaluated for social/emotional and academic delays.
This came as a bit of a punch in the gut. You see, I knew my child was ahead before this.
Additionally, we always watched him so closely because we have another child on the spectrum.
So why now?
What changed?
Had I missed something?
Could I have been in denial for 4 years?
Therapies For Kids With “Behavioral” Problems
So, we navigated this journey of many evaluations.
- Occupational Therapy,
- Speech Therapy,
- specialty Doctor appointments
- and many diagnoses
We entered our toughest season yet in parenting.
I mean parenting has never been easy with our other children, but this season was the biggest heartache of them all.
Entire Family Impacted by PANS/PANDAS
As we navigated our way through a very dark valley of medical appointments, wrong diagnosis, the school system, our home life and watching him deteriorate rapidly.
I began doubting everything especially the vision I knew God had shown me.
I was questioning everything I once knew to be true!
PANDAS/PANS: Finally It Made Sense!
Then there it was one night, almost 2 years later. It was staring back at me on a screen.
All my child’s symptoms listed.
Everything.
Our nightmare finally given a name. PANDAS. PANS.
How had we missed this?
Why was this not discussed, mentioned?
Why am I the one figuring this out?
I’m just a mom and I am discovering what this is. THIS IS PANDAS/PANS.
Symptoms Confused with PANS/PANDAS
- ADHD / ODD
- Regressive Autism / PDD-NOS
- Sensory processing disorder
- Severe Anxiety with OCD – RAGE
- Bi-polar disorder with hallucinations
- Anorexia Nervosa
This is PANDAS or PANS.
It is our HELL in 1 word. All of his symptoms.
And this is our HOPE! Finally getting the correct diagnosis is the first step to healing!
If you have child with multiple diagnoses, please take some time to research PANS/ PANDAS.
To hear more from Heather as she navigates her son’s continuing battle with PANS/PANDAS/AE, check out her Facebook page. Trust in the Journey.
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Very informative. Thank you for this!
I have never heard of PANDAs/PANS. Thank you for adding to my knowledge. I hope I never have to use that knowledge but at least I know about it if I notice the symptoms.
Yes! Hoping you don’t ever need to know about it. I had no idea until it hit my home two summers ago. Just good to spread awareness so kids can get early diagnosis and treatment. It’s so much harder to knock it out when it has gone undiagnosed for too long. Earlier diagnosis, better prognosis. Thanks, Rachael!! 🙂