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Looking for feedback on peoples experience with neuropsych evaluations What do test results look like for Pandas/pans kids who do not have other diagnosis (such as autism)? How are the results written up? Do the neuropsych "symptoms "end up looking like behaviors as the result of the evaluation? Did you find the evaluation useful?

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We had a horror story with a neurologist's evaluation, because he flat out refused to believe that PANDAS (or PANS) is real. We basically got a dual diagnosis of Tourette's and "psychogenic seizures". They (neurologist and student) didn't take the time to ask about the tics they felt they saw right there in the appointment - they were actually an OCD routine (our son used to wipe his eyes on a clean section of wall whenever he saw something that he thought was dirty) - if only they would just ask us what we thought!. On the wall of the office facing the doctor was a sign "Parents know their children".

 

Our misdiagnosis happened to precipitate many problems for us. Those downstream problems we probably could have mitigated better, but we were in a state of shock with the result because we were led to believe that we were seeing someone knowledgeable in PANDAS/PANS.

 

So my advice would be to ensure you have someone who not just says he knows about PANDAS/PANS, but believes it as real.

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  • 2 months later...

In my albeit somewhat limited experience, psych evals are all very similar regardless of the underlying cause/dx, in that the psychologist/psychiatrist will ask some general questions to try to focus his her efforts into certain areas (eg. does the kid sound like s/he has AD/HD? OCD? Anxiety? etc.) and then complete evaluations specific to those potential diagnoses to see if your child meets criteria.  Pretty standard stuff.  My frustration at this point is with how MD/PhDs are proposing to treat my son, who got a diagnosis of PANDAS at age 2/3, but now meets criteria for Tourette because his tics have been more or less constant for a year or so.  My local peds neuro doesn't recognize PANDAS (even suggested that TS and PANDAS are treated the same way!!!!) and all they want to do is put my son on the neuropsych medication carnival ride.  The trick is finding somebody knowledgeable about PANDAS who wants to identify and treat the cause.  Meds have their place, but in my humble opinion it's always better to figure out the cause and not just take meds to try to dampen the symptoms.

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Depends on who does it. You will typically get a traditional analysis and is usually unbiased. Pandas/pans is a curve ball that will skew the analysis based on symptoms. We had one done at the request of DD's psychiatrist from UCLA medical. It has value and will give you a baseline document you can use with other professionals which can help with getting needed services in school or from social services. I would highly recommended getting  one. Politically correctness has changed classifications to a single definition of ASD. I would think that anyone with pandas/pans undergoing an evaluation with an active flare would get this definition.

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