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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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Is this Pandas?

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Hi, I'm new to the Pandas forum.  I was wondering if someone could help me figure out if my son has Pandas.   

In February of 2016 we saw a neurologist because my son started motor tics.  She was not concerned and said these type of tics are transient and usually go away by the age of 12.  In April of this year we went back to the neurologist because my son started vocal tics.  This time because he had both motor and vocal tics within a year she diagnosed him with Tourettes.  We wanted to rule out Pandas and did some research.  My son did not demonstrate the diagnostic criteria such as the sudden onset of tics, doesn't have OCD or restrictive eating disorder or anxiety or sensory amplification or behavioral regression or deterioration in school performance or sleep disturbances.  We recently went to a naturopathic doctor to get help with his tics and she diagnosed him having Pandas.  She had him put out his arms straight in front of him and close his eyes.  Since his fingers pointed upwards, her diagnosis was Pandas.  Has anyone else experienced this type of diagnosis?  Thanks.

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Fingers pointing upwards as a diagnostic criteria for PANDAS is a new one on me.  I wouldn't trust that.

With the description of symptoms (or lack of symptoms) that you give, I tend to doubt that even those that are knowledgeable in PANS/PANDAS would give your son a PANDAS or PANS diagnosis.  You haven't mentioned strep - that is a requirement for PANDAS - but without it you can still try on PANS.

But PANS/PANDAS are (imho) tight boxes, and real life is so much bigger (in terms of complexity) than the boxes we make. So, to leave you still hanging a bit on diagnosis, try this on:

1) Wonder why "these types of tics usually go away by the age of 12?".  Tourettes doesn't provide a framework to explain that, but a similar effect happens in PANDAS/PANS - about half have symptoms go away completely with puberty.  With PANDAS/PANS, the framework is immune system dysfunction, which (who knows) can change at puberty?  So, might disappearing tics be related to PANS/PANDAS?  Hmmm.

2) One of the studies in the 2015 JCAP journal special edition on PANDAS (http://online.liebertpub.com/toc/cap/25/1) took kids with tics and/or OCD (no special diagnoses necessary) and measured certain known anti-neuronal antibodies (they probably don't know them all, but enough of them to find interesting results here).  The result? (well, one of them, anyway):  most of them have levels of anti-neuronal antibodies that folks without tics and OCD don't (see Figures 4 and 5 and Table 2).  Anti-neuronal antibodies are a proposed PANDAS mechanism.

Looks like that particular paper is one of only 3 in that journal (at the link I gave) that is free to download.  Download it for yourself, not for anyone else - i.e. if you present it to your neurologist, my bet is that she won't have time or inclination.  "Your son has has Tourettes, here is your SSRI."

Edited by bobh

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