What is it? Is it real? How do you know it's not just tourettes? Isn't there a pill for that?
I've been getting lots of questions lately and comments, articles, advice lately that shows me I've not done a good job educating our friends and family about PANDAS. Ideally, I'd have Erik write this. He's the science guy. I hope I can explain in a way that makes it easy for others to understand.
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections. In other words, if B is exposed to strep, he creates antibodies that cross the blood brain barrier, interact with neuronal tissue and attack his basal ganglia. Basal what? The basal ganglia is the part of the brain that is responsible for voluntary movement and behavior. In B, it causes tics, sometimes obsessive behavior, and meltdowns over things that would seem 'trivial' to the general population. We listened to a lecture from a top PANDAS physician who said PANDAS is being changed to PANS. In PANS, anything that causes inflammation in the body can trigger a flare. We've found this to be true with B.
How do you know it's not just tourettes? When B was three, for a few weeks we noticed he was blinking his eyes a lot and started popping his shoulders. Shortly after that, he became ill with a high fever and lethargy. As he began to recover from this illness, it was like he changed overnight. He woke up with frequent and strong tics. Although sensory issues and regressions in other areas seemed to be happening over time (or at certain points in time), the tics were sudden onset. We had an anti dnase B test run which showed his strep titers were elevated. We run this test every 4-6 months to keep them in check. It is important to rule out PANDAS before accepting a diagnosis and treatment for Tourettes Syndrome. The medications used for Tourettes actually exacerbate PANDAS.
Is PANDAS real? There seems to be a controversy in the medical community about this. However it is recognized by the National Institute of Mental Health. I can tell you it is very, very real.
Isn't there a pill for that? In many cases, pills mask symptoms. If we'd accepted a pill for tics, B's PANDAS would have gotten worse. He would have been misdiagnosed. We were determined to get to the bottom of the cause of the tics. In many cases, PANDAS is treated with long term antibiotics and/or routine IVIG treatments. For B, long term antibiotic use is a bad idea. Antibiotic use is hard on the digestive system. B already has issues with increased intestinal permeability. His food intolerance list would have grown if we'd gone that route. Food intolerances lead to more inflammation in the body which leads to greater PANS flares. It would be never ending. Instead, we removed offending foods to decrease inflammation, reduced allergen exposure, and he is on a supplement regimen that fights strep, bacteria, inflammation, and viruses. Also, to fill in the gaps of the nutrition his body has a hard time absorbing. It's more complicated than all that, but that's the shortened version.
To learn more, please visit the links provided in my previous post or visit the NIMH: http://intramural.nimh.nih.gov/pdn/web.htm
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