PANDAS and Developmental Optometry
Hi All,
I wanted to share with you something that I've become more sensitized to, and see if any of you have encountered this in your practices. I've attached a background article that Carole Hong and I recently co-authored, at the end of which I mentioned PANDAS. This is an acronym for:
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. You can read more about it at:
http://intramural.nimh.nih.gov/pdn/web.htm
What intrigued me is a book that is currently on the NY Times bestseller list, called "Saving Sammy". It is an incredible book that I'd urge you to buy and read cover-to-cover. While it's easy to over-extrapolate the prevalence of untreated strep infections, it isn't easy to over-extrapolate the significance of treating it. And in this case, it seems like getting a child started on Augmentin is extremely helpful - but recovery is years in the making once the brain has been damaged by the persistent untreated strep cycles (which show up on high strep titers, if physicians do the blood workup for it).
The reason I'm writing is that I saw a child last week who was "diagnosed" as having a rare disorder, known as Landau-Kleffner, which is now felt to be part of the Autistic Spectrum. However, his profile of relatively sudden onset signs matches PANDAS almost exactly.
So .... anyone out there have personal experience with "PANDAS" among your patients?
I wanted to share with you something that I've become more sensitized to, and see if any of you have encountered this in your practices. I've attached a background article that Carole Hong and I recently co-authored, at the end of which I mentioned PANDAS. This is an acronym for:
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus. You can read more about it at:
http://intramural.nimh.nih.gov/pdn/web.htm
What intrigued me is a book that is currently on the NY Times bestseller list, called "Saving Sammy". It is an incredible book that I'd urge you to buy and read cover-to-cover. While it's easy to over-extrapolate the prevalence of untreated strep infections, it isn't easy to over-extrapolate the significance of treating it. And in this case, it seems like getting a child started on Augmentin is extremely helpful - but recovery is years in the making once the brain has been damaged by the persistent untreated strep cycles (which show up on high strep titers, if physicians do the blood workup for it).
The reason I'm writing is that I saw a child last week who was "diagnosed" as having a rare disorder, known as Landau-Kleffner, which is now felt to be part of the Autistic Spectrum. However, his profile of relatively sudden onset signs matches PANDAS almost exactly.
So .... anyone out there have personal experience with "PANDAS" among your patients?
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Permalink Reply by Ruth Villeneuve on -
Dr. Press and Dr. Hong,
Thank you for sharing this. I have been hearing more and more about PANDAS on the news and through the internet. Although we have not yet experienced a case in our office, I think it is important that we all heighten our awareness regarding this condition as it will only be a matter of time.
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Permalink Reply by Dr. Leonard J. Press on -
You're welcome, Ruth. What fascinates me about this condition is twofold. Number one, as with early cases of ASD, many of us saw children "on the spectrum" early in our careers and didn't recognize it. So chances are you may have seen a child with PANDAS in our office, but they weren't identified as such yet.
If the author of "Saving Sammy" is correct, then there are significant numbers of children experiencing PANDAS. The "Neuropsychiatric" piece of this is huge, and includes many inflammatory process interfering with brain function. So in that regard, the first order of business is to quell the inflammatory process before its wreaks havoc after reaching a level of toxicity. While I'm far from a knee-jerk "give 'em drugs" person, there is a time and a place for antibiotic therapy. And these children need antibiotic therapy (in addition to other therapies).
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Permalink Reply by Ruth Villeneuve on
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I think that you are right Dr. Press. We might have seen these patients in our offices without knowing it. Here is the link to their story on the Today Show.
http://www.youtube.com/watch?v=50bQtkfiHvs
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Permalink Reply by Dr. Leonard J. Press on
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Thanks, Ruth. I had previously heard about Sammy's story on Today from my wife, Miriam, but hadn't seen the piece - so thanks again for the link. I hope many Sovoto colleagues get to see it!
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