If you’re just starting out on your journey as a PANS/PANDAS parent, you’ve probably 100-freakin-percent got a ton of questions.
PANS/PANDAS is a really tough topic to explain (and much harder to parent), so I want to take at least a little of the “complicated” off your plate with a simple explanation of what’s going on in your kiddo’s brain.
(Or, as simple as I can make it, anyway.) Before we begin though, let me make sure you know: I'm NOT a doctor. I'm just a mom of a PANS/PANDAS child who's passionate about helping other parents. None of this information should be used for diagnosis or treatment. Please leave all of that up to a medical professional.
So... What Is PANS?
PANS is not something you cook with. Actually, it’s an acronym. Bear with me, it’s a mouthful:
PANS stands for:
Pediatric
Acute-onset
Neuropsychiatric
Syndrome
Like I said, it’s a mouthful—so let’s break this down real quick.
Pediatric. This means it usually happens in childhood, before puberty. It’s not IMPOSSIBLE for it to happen at a different age, but the vast majority of cases happen between ages 3-12. Only occasionally does it happen older or younger.
Acute-onset. This means it usually comes on quickly. Really quickly—like, even over the course of a weekend. There are lots of cases of children leading normal lives, and then suddenly they turn into a different person overnight.
It’s really important to note, though, that this isn’t always the case. There is sometimes a build-up of relatively “normal” but not-normal-for-them symptoms that can precede full-blown PANS/PANDAS.
Sometimes called “soft signs,” this can be anything that is out of their norm that also falls within a typical PANS diagnosis. Things like increased anger, school refusal, pickier eating, increased urinary frequency, new fears, and many other things.
For many children (including my own son), they may show troubling symptoms here and there for months or years beforehand. A parent may chalk it up to something that’s appropriate for their age, and not pursue it until their child falls off a sudden "PANS/PANDAS cliff" in the weeks or months afterward.
Neuropsychiatric. Broadly, this basically means having to do with the physical make-up of your brain (neuro) and your behavior, thoughts, and actions (psychiatric).
Since a child with PANS or PANDAS has an inflamed brain, it affects the way they think, act, talk, and function.
Syndrome. This word we know. According to Google dictionary, this is “a condition characterized by a set of associated symptoms.”
What Causes PANS?
While the definition of PANS is pretty straightforward, the actual cause of PANS is a bit less easy to understand. It’s believed that it’s a cocktail of different factors, all coming together to form the perfect storm. The final trigger, however, is almost always an illness or infection.
According to researchers, PANS can be caused by:
Influenza
Varicella
Mycoplasma pneumoniae
RSV
Lyme disease
And many others
It’s even been suggested that concussive head trauma can cause PANS.
What Is PANDAS?
PANDAS is a subset of PANS. It tends to look very similar, but those two extra letters are important.
PANS stands for:
Pediatric
Acute-onset
Neuropsychiatric
Disorders
Associated with
Streptococcal Infections
An even BIGGER mouthful, but the difference here is the trigger.
What Causes PANDAS?
PANDAS is specifically caused by Group A strep infections, while PANS can be caused by many kinds of disturbances to the brain and immune system.
We know that with PANDAS, strep actually has the ability to mimic molecules found in the body. The strep bacteria literally dresses up like healthy body tissue (in this case, brain tissue), and is free to roam about the body—undetected.
Eventually though, the immune system finds the invaders and kills them. The problem is that the body’s natural defenses are now on high alert. They now assume ANYTHING that looks like that strep bacteria is also a bad guy, and the body begins attacking its own healthy brain cells.
This results in brain inflammation, which results in all the signs and symptoms of PANS/PANDAS.
Signs & Symptoms
To be considered PANS or PANDAS, a child has to have either one or both of these:
OCD
Motor tics
They may (and probably will) also show a number of these signs as well:
Increased urinary frequency
Irritability
Aggression
Rage attacks
Restrictive eating
School refusal
Oppositional behaviors
Depression
Quick and intense mood swings
Behavioral/developmental regression
Deterioration in school
Misophonia
Hallucinations
How Is PANS/PANDAS Diagnosed?
A PANS/PANDAS diagnosis (like most everything else about the disease) isn’t as straightforward as one would think.
There is no ONE test that can be run to determine if someone has PANS or PANDAS.
While there are multiple labs that can backup a person’s label as PANS/PANDAS, at the end of the day it’s a clinical diagnosis. (Meaning the diagnosis is based on “Do they fit this list of signs and symptoms?” rather than any set of labs.)
A few common labs include:
Basic blood work: IgA, IgM, IgG, B12 and vitamin D
Viral/bacterial testing: swabbing for strep throat, antistreptolysin O (ASO), and testing for Lyme disease and coinfections
Additional testing, such as the Cunningham Panel
Why PAN/PANDAS Is Hard to Diagnose
With PANS/PANDAS, there's often an extra fight to getting diagnosed—and that’s just for recognition that the disease exists. As a relatively new (but growing) illness, pediatricians often are either ignorant of PANS/PANDAS… or worse, outright dismissive. (Just bein’ honest.)
With no clear lab test to prove or disprove it, some doctors have mistakenly concluded that it doesn’t exist. It DOES exist, though, and is well-documented. However, this doesn’t mean that every pediatrician is familiar with it, is willing to diagnosis it, or has the knowledge to treat it.
With its long list of symptoms, kids are routinely misdiagnosed long before they receive a true diagnosis of PANS/PANDAS.
Symptoms of P/P can often mimic symptoms of other more well-known diseases, which is why it can be hard to spot. These include:
Tourette’s Syndrome
Obsessive Compulsive Disorder (OCD)
Autism Spectrum Disorder (ASD)
Oppositional Defiance Disorder (ODD)
Anxiety Disorder
Bipolar Disorder
Pathological Demand Avoidance (PDA)
Disruptive Mood Dysregulation Disorder (DMDD)
Sensory Processing Disorder (SPD)
And the list goes on…
Interestingly enough, the main tip-off for many parents that there’s something deeper going on is the fact that their child has many of these diagnoses at once.
If it turns into an "alphabet soup" situation, with many different disorders being assigned to the child, it’s a very good idea to check for a root cause.
An Overworked Immune & Nervous System
Both PANS and PANDAS are signs of an immune system and nervous system gone wrong. A child’s body, sensing a threat, gears up and starts fighting the intruder. The problem is it picks the wrong target—and aims for the brain instead.
It starts going after the basal ganglia, which is a group of nuclei responsible for all kinds of different functions in the body and mind, including:
Processing emotions
Processing sensory stimuli
Preventing unwanted movements
Processing impulse control
Here’s why it sucks. When the basal ganglia is being attacked, it can’t do its job the way it should. And since it’s responsible for many different things, the effects can be widespread and seemingly unrelated.
Emotions begin going haywire, every sense feels intense and overwhelming, you end up with unwanted movements (like motor tics and choreiform movements), and intrusive thoughts run rampant (hello, OCD.)
The specific way a kid’s brain and body react to their “brain on fire” might vary, but it’ll follow a similar path and have a similar theme.
One child may have involuntary eye blinking with a compulsion to wash their hands over and over. Another may show intensely picky eating, only wear a certain outfit for a month straight, and break down in tears if the house isn’t in perfect order. Both of these kids are actually showing forms of OCD.
In young children, OCD can present differently. Instead of rituals, they may be obsessed with only a certain color or number—anything else is “bad” and results in a rage. They may also exhibit intense fears, separation anxiety, or prolonged (and extreme) tantrums.
What Is a PANS/PANDAS Flare?
One of the ways PANS/PANDAS is recognizable versus other diseases is the on again/off again way it presents. Symptoms get worse, then get better, then get worse again based on different triggers.
These triggers can be anything from a new illness to a moldy living environment to a person in the house who’s unknowingly carrying strep.
Flares can last anywhere from a few days to a few years at a time. This comes with increased symptoms, and can put a lot of strain on the child and the household. (I do want to add, though, that just because a child isn't actively flaring, it doesn't always mean their symptoms go entirely away. A flare is a pronounced worsening of symptoms, but many parents still report that their child doesn't return to baseline in between those rougher patches.)
Susceptibility
Obviously, not every child who gets strep or a related infection will end up with symptoms of P/P. This begs the question then.... why do some children develop neuropsychiatric symptoms from illness, and some don't? Really, it all comes down to what our individual bodies are susceptible to. Illnesses are almost never the sole cause. Instead, they’re “the straw the broke the camel’s back.”
When you do a deeper dive, most of these children also have other risk factors at work.
Toxic mold exposure
Genetic abnormalities that make detox more difficult
Heavy metal exposure
Family history of autoimmune disorders
Family history of mental illness
These things put a strain on their bodies to the point where their immune and nervous systems aren’t able to work properly. It’s often described as a cup that fills and fills until it finally spills over.
PANS/PANDAS is basically your child’s cup overflowing.
The central nervous system and the immune system are connected in ways that science is just now beginning to understand. Even peer-reviewed studies have shown that our brains and our immune system are both interconnected.
(I personally found this video interesting for his take on how neurological function affects the immune system and vice-versa.)
Can PANS and PANDAS Be Cured?
Yes! The good news is—there IS a cure for PANS/PANDAS. There’s also a bit of bad news, though. Because this is such an individualized disease, the healing process is also individualized.
For my son, we’ve made (and are continuing to make) great strides with Classical Homeopathy. He was absolutely phobic of needles and it would’ve taken an entire wing of nurses to hold him down for labs, which is why I’m grateful for this gentle, non-invasive treatment. (You can't get much more kid-friendly than a literal sugar pellet.)
For others, though, what works best may be:
Antibiotics
Anti-inflammatory diets
Naturopathy and supplements
Addressing underlying infections
Mold remediation
Removing tonsils
IVIG treatments
Just as it took a while for your child’s cup to “fill up,” it will probably take a while for your child to heal. So don’t be discouraged if it’s not overnight.
(Again, I’m not a doctor, and you should consult your medical professional for help deciding what’s best for your kiddo. This is simply a list of modalities that have been used by doctors to treat P/P in the past.)
PANS Sucks. PANDAS Sucks. But There Is Hope.
There’s a lot to say about this frightening, grueling, tests-you-to-your-very-core disease. But if you’re fighting this fight, you probably already know about the long days and hard nights.
Instead, let me remind you that your kiddo is NOT their disease, there is a light at the end of the tunnel, and the only way to lose is to give up.
Like that wise old book, “We’re Going on a Bear Hunt,” once said…
We can’t go over it. We can’t go under it. We have to go THROUGH it.
Here’s your sign that you’ll make it through.
