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Swedo clarifies PANS and PANDAS


Buster
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Hi folks,

 

I've seen a bunch of traffic about whether PANS replaces PANDAS. It does not. I checked with Dr. Swedo and with Dr. Leckman. PANDAS remains a research criteria and there is considerable scientific support for the association with streptococcal infections as well as support for the broader PITAND criteria due to H1N1, mycoplasma pneumonia, etc.

 

You might be asking "why if there is good scientific evidence do we have three criteria rather than one". Well....

 

The reason for creating PANS as a new set of criteria was to enable epidemiology studies. Dr Swedo writes in PANS that the lack of uniformity in applying the PANDAS criteria led to significant differences in the outcome of studies. This is research speak for "if you don't have any ducks in your sample, don't make claims about ducks".

 

Dr. Swedo comments that "establishing an etiologic role for GAS in the onset of PANDAS is often as difficult as it is for SC". In fact it is probably worse because several researchers failed to understand what a PANDAS case even looks like.

 

Neurologists seem to think PANDAS is a horse and pediatric psychiatrists/clinicians see PANDAS as a zebra with very distinctive markers. But until neurologists see a zebra -- it's sort of hard to describe the difference.

 

I'm writing this to ask your help in reminding folks why we have three distinct criteria:

  1. PANS is to help neurologists actually recognize a zebra so we can have multi-site research
  2. PANDAS is to help researchers understand the pathogenesis in one specific infection
  3. PITAND is to be a broader category to remind folks it isn't just GABHS

 

I know we as parents are very focused on diagnosis and treatment, but please don't lose sight of the big picture. We must get uniformity of subjects in multi-site research -- i.e., so experiments can be replicated. Otherwise we'll continue having neurologists testing horses and psychiatrists testing zebras with controversy on whether the tail is the same (hope the analogy works).

 

 

Buster

Edited by Buster
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Hi folks,

 

I've seen a bunch of traffic about whether PANS replaces PANDAS. It does not. I checked with Dr. Swedo and with Dr. Leckman. PANDAS remains a research criteria and there is considerable scientific support for the association with streptococcal infections as well as support for the broader PITAND criteria due to H1N1, mycoplasma pneumonia, etc.

 

You might be asking "why if there is good scientific evidence do we have three criteria rather than one". Well....

 

The reason for creating PANS as a new set of criteria was to enable epidemiology studies. Dr Swedo writes in PANS that the lack of uniformity in applying the PANDAS criteria led to significant differences in the outcome of studies. This is research speak for "if you don't have any ducks in your sample, don't make claims about ducks".

 

Dr. Swedo comments that "establishing an etiologic role for GAS in the onset of PANDAS is often as difficult as it is for SC". In fact it is probably worse because several researchers failed to understand what a PANDAS case even looks like.

 

Neurologists seem to think PANDAS is a horse and pediatric psychiatrists/clinicians see PANDAS as a zebra with very distinctive markers. But until neurologists see a zebra -- it's sort of hard to describe the difference.

 

I'm writing this to ask your help in reminding folks why we have three distinct criteria:

  1. PANS is to help neurologists actually recognize a zebra so we can have multi-site research
  2. PANDAS is to help researchers understand the pathogenesis in one specific infection
  3. PITAND is to be a broader category to remind folks it isn't just GABHS

 

I know we as parents are very focused on diagnosis and treatment, but please don't lose sight of the big picture. We must get uniformity of subjects in multi-site research -- i.e., so experiments can be replicated. Otherwise we'll continue having neurologists testing horses and psychiatrists testing zebras with controversy on whether the tail is the same (hope the analogy works).

 

 

Buster

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How can we parents help? We have so much information to offer. If the researchers had a data bank of our families with a list of specific controlled questions to ask, wouldn't that help? We even sent our genetic testing and (it had an interesting "marker"!) to Dr. Geller last year, answered 3 hours of questions and gave blood from us all. What do they need.....Our family would be willing to help...

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