Comment by ericskiff | Hacker News Reader

Comment by ericskiff | Hacker News Reader

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For any parents reading this and wondering if their kid is affected, I highly recommend reading up on PANS and PANDAS.

Watching our happy, healthy kid change before our eyes with sudden-onset OCD, vocal and motor tics, terrible mood lability and sleep issues, and other strange symptoms like handwriting regression was heartbreaking.

His doctor suggested it was Tourette’s and I happened to notice that his symptoms included a dry vocal “cough” and insisted on him being tested for strep, which he had. We got the antibiotic and it went away. That cycle happened 2 times until the 3rd time, the symptoms persisted and he no longer had strep. That lead me to discover PANDAS and we then began getting him treated for that.

If you’ve noticed similar changes in your kids, definitely read up on it and find a doctor who understands the link and is willing to explore treatment options with you.

I realized I didn’t finish the story on this comment.

5 years later, our son’s recovery is a daily miracle. He’s a happy, healthy 13 year old with only a shadow of his former symptoms.

We were able to achieve symptom reduction through long course antibiotics, inflammation reduction supplements and medications (Tylenol and steroid bursts), and eventually having his tonsil’s out. After that we would have done IVIG if needed.

We maintain some inflammation reduction supplements but he’s off the rest of the meds and doing really remarkably, knock on wood. If you’re going through this with your kid, I send you all the love in the world, and hope that you’re able to relieve their symptoms as well.

What inflammation reduction supplements did you use?

Turmeric extract (ehanza), vitamin-d, omega, and Advil during flares.

Very interesting. We're on long-course Keflex (cephalexin) and 2 Aleve daily.

Very similar story over here. Similar treatment and recovery, BH. For people curious about this syndrome, the most salient symptom is a sudden onset of multiple things that people don't usually develop in later childhood, let alone all at once. (OCD, tics, etc)

I have been told that kids with PANS / PANDAS often get better spontaneously when they hit puberty as well, which some speculate is due to changes in the immune system that occur at that phase of development (the body stops producing T-cells), so there is hope for families that have young children that things can improve gradually with time on their own if you hang in there as well.

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