Let’s Cut Through the Confusion. 4 PANS/PANDAS Myths You Need to Know
If your child is diagnosed with PANS/PANDAS, you’re probably tired of explaining what’s going on. Unfortunately, these are highly misunderstood — and often underdiagnosed — illnesses that profoundly affect children and their families.
And oftentimes people who do know about them maintain a variety of misconceptions. So today we’re going to break down some of the most common myths about PANS/PANDAS.
PANS/PANDAS Myth #1: PANS/PANDAS isn’t real
If you’ve gone through PANS/PANDAS in your family, you know the symptoms all too well:
⇨ Obsessive, compulsive, and repetitive behaviors
⇨ Dramatic and frequent mood changes
⇨ Suicidal thoughts
⇨ Fear and panic attacks
⇨ Incessant screaming
⇨ Emotional, developmental, and fine motor skill regression
⇨ Visual or auditory hallucinations
⇨ Sleep disturbances
⇨ Restrictive eating
⇨ Sensitivity to light, sound, and touch
⇨ Difficulty focusing and hyperactivity
And often the severity of these symptoms disrupts not just your child’s life, but your entire family. These symptoms are not imagined.
But for some people, the idea that intense psychological symptoms could result from a physical cause doesn’t make sense. How could something like a strep infection cause such drastic behaviors and personality changes?
And while the labeling of PANS/PANDAS is relatively new, there is no doubt that they are real diseases. Experts from a variety of highly respected institutions including Harvard, Stanford, Yale, Georgetown, Columbia, and the National Institutes of Mental Health (NIMH) have spent years both studying and successfully treating these illnesses.
PANS/PANDAS Myth #2: PANS/PANDAS is the same as other mental health disorders
This is a dangerous myth because it presupposes that PANS/PANDAS can be treated with conventional mental health practices like talk therapy or psychiatric medications.
And while I’m a believer in talk therapy for appropriate issues, no amount of talking is going to fix the underlying problem that causes PANS/PANDAS.
PANS/PANDAS are autoimmune conditions. They aren’t the result of psychological trauma or even a brain chemical imbalance.
When your child suffers from one of these diseases, their immune system is actually attacking their brain. This is a purely physical condition that has nothing to do with psychological trauma.
If you want to treat PANS/PANDAS, you have to address the issues with the immune system. First, you must eradicate the infection that triggered the autoimmune reaction. In the case of PANDAS, this is strep. You can read more about that here.
But you also need to address the underlying conditions that made the body susceptible to autoimmune issues in the first place. You can read more about that here.
And while talk therapy and balancing brain chemicals can help some, it’s really only a drop in the bucket with PANS/PANDAS. If you don’t fix the underlying problems, the symptoms will persist.
PANS/PANDAS Myth #3: There are no tests for PANS/PANDAS
While it’s true that there isn’t one specific lab test that a doctor can run to provide a definitively positive or negative result, it is possible to get an accurate PANS/PANDAS diagnosis.
PANS/PANDAS requires a clinical diagnosis. This means that the doctor will look at symptoms, health history, and related testing to come to a conclusion.
For PANDAS, your child’s doctor will look for:
- Significant obsession, compulsion, or tics
- Symptoms that begin abruptly
- Age — children who have not entered puberty
- Group A streptococcus infection
For PANS, your child’s doctor will look for:
- Dramatic, abrupt onset of OCD or severe food restriction
- Additional severe neuropsychiatric symptoms than came on suddenly
- Symptoms that cannot be explained by any other known medical or neurological disorder.
Just because a condition requires a clinical diagnosis doesn’t mean that there’s no way to diagnose it. It’s just more complicated. PANS/PANDAS are complex conditions. So nothing will be simple.
✔ These diseases are multifactorial, meaning there isn’t just one single cause.
✔ Treatment often requires a multi-faceted approach, potentially including both medications and holistic support so the body can self-heal.
✔ Diagnosis isn’t as simple as just looking for a positive or negative blood test.
In fact, sometimes all the lab tests all come out negative. And while seeing the confirmation of a positive lab test can be reassuring, negative tests do not rule out PANS/PANDAS. Because these diseases require a clinical diagnosis, lab tests are only a part of what your child’s doctor is looking at. So if your child tests negative in their lab work, don’t panic. You can still get an accurate diagnosis of PANS or PANDAS.
PANS/PANDAS Myth #4: Antibiotics didn’t help so it can’t be PANS/PANDAS
PANDAS results from a strep infection gone awry. So the solution to your child’s symptoms must start with addressing the strep infection. And while taking antibiotics for the strep can be an important step in the process, it doesn’t solve the entire problem.
PANS/PANDAS are autoimmune disorders. Your child’s immune system is mistakenly attacking a part of the brain called the basal ganglia. And while there is an initial infection that triggers this reaction, stopping the infection will not necessarily make the symptoms go away.
There are medical treatments available including:
IVIG — an intravenous treatment for immune deficiencies
Plasmapheresis — the removal of auto-antibodies from the blood
Steroids — to reduce brain inflammation
And while these can help, they don’t address the underlying conditions that allowed PANS/PANDAS to develop in the first place.
In my practice, I did deeper. I take a holistic approach to helping children recover from PANS/PANDAS. I look at the body’s toxic load and work with gentle detoxification methods so that we can clear the toxins that are weighing down your child’s system.
I use homotoxicology to safely detoxify your child’s body in a non-invasive and gentle way. Many detoxes are harmful because they force the body to rapidly release toxins without supporting the process. But with homotoxicology, I use homeopathics and nutritional supplements to support the body in safely eliminating specific toxins.
If you’re tired of wading through the myths, misinformation, and even ignorance about PANS/PANDAS to find real solutions for your hurting child, please reach out. I’m here to help.
Book Your Discovery Call here.
Even if you’re not ready for a personalized plan, I have resources that can help get you started. You can sign-up for my email newsletter and get emails that will further support your journey. You’ll also receive a free copy of my ebook Everyday Immunity. You can sign-up here.
Come join my private Facebook group for the parents of children affected with PANS/PANDAS. This is a safe space where you can interact with other parents who understand what you’re going through.
Photography by Jocelyn Lee