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I'n OBVIOUSLY not a doctor. And I've sent this list below to two, because in order for it to go anywhere, it would have be become part of a comprehensive guide to dx'g pans, but here is my thought. Certain things make it more likely that you have pandas. Its not just a list of symptoms, their presentation, or tests. Its a combination. Some things matter more than others.

 

Here is my personal list. Its weighted.It obviously needs work, and would be part of a much longer comprehensive document. ANYONE READING THIS SHOULD NOT USE THIS LIST FOR DX'G THEIR KIDS. THEY SHOULD SEE A DOCTOR. I'm just a parent that has observed some commonalities on our kids. And I've observed that many kids don't fit the cookie cutter perfect profile for pandas.

 

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You would have a symptoms list- grouped into 3 or 4 different groups - movement, psychiatric, physical, emotional - (we all know the list....)

 

next to each symptom two boxes to check - 1) almost always present, and 2) only present when things are acute -( which suggests episodic course)

 

and on next page - the weighted scale.

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Symptoms from one group(i.e. just tics, just OCD).............................................................1

Symptoms (from 2 different groups)(ie tics and OCD, or OCD and sep anxiety) ...................2

Symptoms from 3 groups .................................................................................................3

Sudden, Overnight Onset.......................................................................................................2

Onset of all Symtoms within 8 weeks...................................................................................1

Positive Throat Culture...........................................................................................................3

Other Strep Infection, impetigo, peri-anal step...................................................................2

Raised Strep Titer..................................................................................................................2

Raised mycoplasma IgM titer..............................................................................................1

Raised Cam K II......................................................................................................................4

Raised anti-neuronals..........................................................................................................4

Immune disorder or dysfuntion....................................................................................1

An episodic course, temporally linked to infections (viral or bacterial)........................3

A worsening of symptoms due to stress or other traumatic event.................................1

Evidence of chronic infection (lyme, other...)...............................................................2

 

 

If you score a 3 or 4, you are unlikely to have panda

4-6 likely to have pandas

6+ very likely to have pandas

 

Pediatric onset, and neuro-psych symptoms are a given.

Its more about the concept than how I weighted them. Only a doctor (or swedo, cunningham, leckman,or pandas expert ) could actually really come out with such a scale. Its the concept. a tool to aid someone that know little about the disorder. Obviously all other disorder would have to be ruled out.I think the docs do a pretty good job of this. So, in my experience they have been able to say what we don't have...just couldn't spit out what we do have.

 

 

Its just an idea. There are probably lots of reasons its a bad one...so please let me know..I don't even know what to do with it.

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Dr L has a checklist/scorecard that is similar to a Y-BOCS scale but geared toward Pandas symptoms. I believe a few other docs may use or have access to it or something similar but do not know who developed it.

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Significance doesn't matter.I'm not trying to say raised cam k is a cause. Just get some sort of a probability. You cannot deny that the vast majority of our kids have raised camk and anti neuronals, and this number goes up in exacerbation (from Leckman recent slide in that presentation that had to be taken down).

 

It also gives people who are borderline something to test for, that might help them decide course of treatment.

 

Advanced topics in Lyme disease is a great read. By Burrasco(?).He's on his 16th? Revision. And I stole the weighted scale concept from that paper. I hope the white paper is shooting for something like it.

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This is not a real scale- Maybe that number should be a 10 and under less likely. I dunno. Some on that has looked at a lot of pandas cases would have to make that call.

 

Urinary frequency - would be in the list of symptoms that I don't show. I'd put that, bedwetting, urinary frequency, in "physical symptoms". Dr K also has "puppet - like movement" on his symptoms list. There are probably a couple other physical ones. The point is if you have tics, and OCD or OCD and Urinary frequency, you are more likely to have pandas, than if you only have OCD only. (so you get a 2 on your symptom group instead of a 1)

 

Again - the numbers I just made up - I just threw on there without much thought - its the concept.

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