Half of you are probably scratching your head thinking “she’s finally going off the deep end.” Some of you might be annoyed at me for writing this, if you’re familiar with the acronym PANS/PANDAS. Let me explain:
PANS/PANDAS stands for Pediatric Acute-onset Neuropsychiatric Syndrome, and PANDAS means the similar but longer phrase Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infection. The first can have different causes, the second is only associated with Strep. To be clear, PANS/PANDAS are clinical diagnoses, and they are an autoimmune response or disorder affecting the brain and neurological system that manifests as anxiety, OCD, oppositional behavior, and sensory issues, among others. Both disorders are controversial and incompletely understood.
The new trend
Now that the technical jargon is defined, let me explain why I’m writing about this. In every parenting group I’m in, every homeschool group both local and worldwide, and even the local community, PANS/PANDAS has become the new buzzword. The “trend,” if you could call such a thing a trend.
In my special education and gifted groups, parents asking for advice on how to deal with behavioral issues are always told “it could be PANS/PANDAS” and questioned if the behaviors are sudden-onset. They share hushed stories about how their child has gone through costly and difficult treatments to cure them, and how difficult it is living with a chronic illness.
The autoimmune cynic
I’ll admit, my initial response is often an eye-roll to these comments. Everything – from behavioral to clinical – is PANS or PANDAS. It’s the bogeyman, the monster lurking in the closet that turned your sweet little child into something you don’t recognize.
I understand that PANS and PANDAS are real. I’m not convinced that it’s common. I’m also concerned that it’s an “acceptable” alternative to the more conventional diagnoses like anxiety, OCD, and so on. They don’t “really” have OCD, it’s a temporary neurological symptom.
Many of the people I talk to who say their child has PANS or PANDAS do so without a doctor’s advice, diagnosis, or input. They self-diagnose their child with the help of Dr. Google. Google can obviously be a helpful resource, but if you do a search for PANS or PANDAS you’ll find a lot of questionable resources popping up.
So why would parents pick this diagnosis instead of the more conventional ones? Because it can be cured. PANS and PANDAS can be treated with antibiotics, and the more severe conditions are treated with medications like the autoimmune meds I’m on to suppress the immune system. In most cases, according to WebMD, PANDAS can be cured and children will resume their normal lives fairly quickly.
Ableism and erasure are a thing
That’s quite … optimistic. It’s way better than facing the idea that your child may battle anxiety for the rest of her life, or spend his entire adulthood stressing over sensory issues. And gods forbid it’s actually autism, right? The attitude is that it’s better if it’s PANS or PANDAS because autism is the “worst” diagnosis?
That’s an incredibly offensive statement when you put it like that, but I’m pretty sure that’s what’s going on behind all these parent-diagnosed cases of PANDAS. Let’s slap a label on it so we can ignore what’s really going on. And that’s sad. These kids may truly need therapies and assistance, but they won’t get the ones they might actually need if the label is wrong.
Not to mention that long-term use of antibiotics is overall a bad idea.
My kids don’t eat bamboo
So no, people, my kids do not have PANS or PANDAS. They are unequivocally diagnosed with an assortment of alphabet soup disorders and issues, and we’re dealing with them and managing them while teaching our kids coping skills. If your kid is diagnosed with PANS or PANDAS, I’m sorry. It sounds like a terrifying, brutal, and abrupt catapult from normality into my world.
If your child hasn’t been diagnosed by a doctor, consider this: are you helping them or harming them by assuming a diagnosis they may not have? And are you reinforcing the stigmas that patients with mental health and autism disorders already face?
Think on it before you get angry at me.