Your child was fine just last week. They did well in school and looked forward to going. Sure, they had challenges at home sometimes, but nothing out of the ordinary. What kid doesn’t fight bedtime or struggle when a new food is introduced?
But suddenly, they just aren’t themselves anymore. And you have no idea what happened.
They won’t leave your side. They refuse to go to school, having meltdowns every morning, and making you late. When you finally arrive, they literally cling to you, screaming and sobbing that they don’t want to go. The same is true at bedtime. The sobbing and screaming come back. They keep saying they are scared of things that didn’t bother them before. They can’t settle themselves to get to sleep, and finally, out of sheer exhaustion, you bring them into your bed.
You notice some changes in behavior, beyond the anxiety. They seem to suddenly be very concerned about something bad happening and have started insisting you do things a very specific way. When you don’t agree to do what they are demanding they have intense rages like you have never seen. It almost looks like your child is no longer there, like they have been taken over by something else.
They have also started blinking a lot. You kept asking if there was something in their eyes that was bothering them, but there wasn’t ever anything. Their eyes weren’t red or irritated. The pupils seemed oddly big, but you assumed it was just the dim light. But now the blinking seems to be getting worse, and you start to wonder if it could be a tic.
You are probably seeing your first flare of PANS or PANDAS.
PANS and PANDAS Explained
PANS = Pediatric Acute Onset Neuropsychiatric Disorder
PANDAS = Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep
PANDAS is essentially a subset of PANS, but it is often talked about separately because it has the most research behind it, with its single known trigger. When the rubber hits the road, PANDAS is PANS. In over a decade of working with these kids, I have never seen a case that was only affected by strep, even if it started that way.
Symptoms of PANS/PANDAS
The presentation of PANS/PANDAS can be widely variable. The common factors associated with both PANS/PANDAS are OCD, mood dysregulation, and neurological symptoms or tics. The mood dysregulation usually involves anxiety and or rage, but can sometimes be more depression. Kids will typically have changes in sleep, cognitive regression (loss of reading or math skills), and behavioral regression. They might also have changes in handwriting, urinary frequency or bedwetting, and sensory concerns.
To learn more about what it looks like in real life, visit our PANS/PANDAS basics page. Scroll down to see a list of symptoms associated with PANS/PANDAS. Each symptom opens to provide a comprehensive description of what it actually looks like. Some of the ways symptoms can show up might surprise you. You can also check out the details of the diagnostic criteria on our blog.
What Is Happening in PANS/PANDAS?
Essentially, the immune system is attacking the brain and nervous system, and often the urinary system as well. As a result, we see inflammation throughout the body and the brain. The section of the brain that is most involved in PANS/PANDAS is the basal ganglia. The basal ganglia is responsible for motor control, emotional regulation, and cognitive function. When the basal ganglia is functioning improperly, you can see tics or other movement disorders, wildly changing moods and extreme emotions, and regressions in things like math and reading skills.
Why Does the Immune System Attack the Nervous System?
When a bacteria or virus infects the body, it wants nothing more than to stay alive and reproduce. In order to do that, they have evolved a technique called molecular mimicry. Basically, they produce proteins on their surface that are similar to those in our own cells. The goal is to look enough like a cell that belongs in the body so that the immune system won’t attack it. The problem is that the cells are similar but not exact, and eventually our immune system figures it out.
Once it recognizes the pathogens, the immune system broadens the attack. In some people, it goes too far and starts attacking their own cells. The immune system attacking the body’s own cells is the central feature of all autoimmune conditions. Most autoimmune conditions are triggered by an infection.
What If My Kid Never Had Strep or Got Sick?
Many kids don’t show any signs of illness; they only get behavioral and neurological symptoms when sick. Parents will often have no idea that their child ever had an infection until they get bloodwork and find antibodies present.
Is This a Genetic Condition?
Somewhat. Scientists are finding genes that are associated with PANS/PANDAS, but that doesn’t make them fully a genetic condition. There are genetic influences, and you will find that autoimmune conditions tend to run in families. PANS/PANDAS is no different. But there isn’t a single gene whose presence means you will definitely get PANS/PANDAS or definitely won’t.
Is This Caused by Our Toxic Environment?
Also somewhat. Our genes and our environment have a strong relationship. What we are exposed to in our environment, including how we eat, stress levels, and toxin and toxicant exposures, influences the expression of our genes. This is called epigenetics. Our environment can have an impact on both whether someone gets PANS/PANDAS and how the condition progresses once you already have it.
Will Treating the Infection Make It Go Away?
Sadly, no. The infection is just the trigger; it isn’t the root cause. Each time you have an infection or an exposure to something that triggers the immune system, you will see a flare of neuropsychiatric symptoms. Until you address the true underlying cause, you will be dealing with more and more flares and an increasing number of things that trigger flares.
What Is the True Underlying Cause?
Susceptibility. Genes and a toxic environment can increase the likelihood of getting PANS/PANDAS, but they still don’t fully explain why an individual gets it. We have seen families with identical twins living in the same home, where only one twin develops PANS/PANDAS. Same genes, same environment, both exposed to the same illness. One gets typical strep throat symptoms, the other gets OCD and tics.
We also see families where multiple kids get PANS/PANDAS, but one has more anxiety and the other more rage. So even the symptoms you experience when you do have the condition are variable. You can take it even one step further to see that one person might have an autoimmune response that triggers PANS, and another has an autoimmune response that triggers type 1 diabetes.
The deepest underlying factor is the susceptibility to having your specific atypical reaction to strep and other bacteria, viruses, or immune triggers. The only way you can address the underlying susceptibility is through classical homeopathy. It addresses the individual’s specific susceptibility so that the body can restore proper function when the immune system has the next virus it needs to respond to.
Is This Something You Will Have Forever?
If left untreated, it is something that will likely get worse. You will likely see progressively worsening and more persistent neuropsychiatric challenges. You also have an increased likelihood of developing more autoimmune conditions, particularly if you don’t address the underlying susceptibility to an atypical and misdirected immune response.
Many adults with mental health diagnoses realize that they actually met the criteria for PANS/PANDAS as a child. PANDAS was only clearly defined in 1998 (later for PANS), so the medical community is still catching up. Early treatment is vital. If you haven’t caught it early, treatment as soon as you recognize what is happening is vital. Even adults who have had PANS for decades can recover once they get appropriate care.
This All Sounds Like My Kid. What Should I Do Next?
First, learn more about diagnosis and treatment options. You can also jump straight to homeopathy, even while you are still working on a diagnosis. You can also learn more about homeopathy and its vital role in addressing susceptibility.
Our Mom & Doc Talk podcast is a great resource for in-depth information about everything you might need to know or consider when dealing with PANS/PANDAS (also available where you listen to podcasts).
Book your free consultation with a member of our team to get all your questions about recovering from PANS/PANDAS answered. Review our FAQ, and our pages on working with us, your monthly commitment, and monthly investment ahead of time, so you can ensure you have plenty of time to talk through what is happening in your family right now.
