A cautious PSA about PANDAS and rapid onset OCD and anxiety in kids

‘Tis the season of strep throat and norovirus and other infections, and that is bad enough. But some researchers and doctors believe that infections can occasionally trigger a misdirected autoimmune response, especially in children, that causes sudden, alarming psychiatric symptoms: extreme anxiety, OCD, intrusive thoughts including suicidal ideation, tics, sudden difficulty with math and handwriting, and sensory problems.

The illness is called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) or PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). A child who’s otherwise healthy develops these symptoms literally overnight, and while the infection that triggered them can be cured, no treatment seems to alleviate the psychiatric symptoms.

I know that not all medical professionals accept PANS/PANDAS as a legitimate diagnosis, and that a lot of very nutty people have latched onto it. I am not a doctor or a scientist. I’m simply a mom passing along information about something that has helped other parents, and that is the entirety of what I know about it. I know three moms — sensible, educated people who accept modern, western medicine, not gullible, fearful, or prone to woo — who had run out of other explanations for their kids’ sudden change in behavior, and got no relief from the normal treatment (therapy, SSRIs). They talked to their doctors about PANS/PANDAS and then gave their kids n-acetyl l-cysteine (NAC), which you can get over the counter. NAC is normally used to prevent asthma attacks and treat rashes, but it truly seems to have cured these kids of their psychological symptoms. 

I am not making any claims about this hypothesized illness or this hypothesized treatment, as I’m not qualified in any way to do so (and I’m certainly not getting any kind of kickback or payment, other than what I normally earn from page views of this site). I’m just passing along what I have heard, because I know how it feels to see a kid suffering and to not know how to help. This is just one more thing to consider.

So if your kid develops anxiety or other inexplicable psychiatric disorders, please don’t immediately assume it’s PANDAS, and please don’t try to treat it without professional help. We have a few kids who suffer with severe anxiety, and it’s not PANDAS. Lots and lots of things can cause psychological symptoms, and sometimes there is more than one cause. But if you and your doctor have tried all kinds of other treatments and nothing is helping, and the kid did have an infection before a very sudden onset of the symptoms, this is something to consider. 

Image: Sherif Salama via Flickr (Creative Commons)

 

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9 thoughts on “A cautious PSA about PANDAS and rapid onset OCD and anxiety in kids”

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  2. I was diagnosed with PANDAS by a neurologist at 4 1/2 years old and participated in some of the first research programs related to it. I was old enough to remember the literally overnight onset of symptoms and didn’t find out there are people who don’t believe the disease exists until I was an adult. With supportive adults in my life I was able to grow up without it significantly impacting school, forming friendships, self-esteem, etc. I’ve had a lot of parents tell me hearing that brings them a lot of hope so I thought I’d share.

    SSRIs and behavioral therapy did nothing to help me either.

  3. Our granddaughter was diagnosed with PANDAS and saw, in addition to her pediatrician, a neurologist, an immunologist, and a counselor. She was treated with IVIG, a series of infusions for which she had to go to the hospital and spend a few hours each time. She is doing well now and has not had IVIG in several years.

  4. I’ve never heard of this. How can you tell the difference between anxiety because of anxiety and worry or if it’s because of Strep? I’m confused about this and wouldn’t have the slightest clue if it’s affected my kids. Anxiety hits every kid at some stage. I mean how many people get strep every year- millions? So how can you diagnose and medicate this? So many questions..

    1. It is so sudden, so severe, that you will immediately notice something is very different. It’s not subtle, and it is literally overnight.

  5. Two children in my extended family have had PANDAS, so I’m familiar with it. So, two months ago, when my 12-year-old son literally woke up bonkers anxious and with OCD, my husband and I looked at each other and said, “strep.” Thankfully our large pediatric group is knowledgable about PANDAS. Our son did test positive for Strep, was treated with antibiotics, and his neuropsychiatric symptoms have very slowly started to improve – at a snail’s pace. I’m very grateful that you shared the information about this supplement. I will look into it with caution, but it gives me hope.

  7. I know a child who developed hallucinations as a result of PANDAS. Fortunately the mom is a nurse practitioner and figured it all out pretty quickly. But yikes! What a scare! We were all praying like mad for a few days.

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