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

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Buster

Venn Diagram -- thoughts?

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Trial3.jpg

 

Would love some thoughts about this picture and whether it matches the literature.

 

About 4% of people have a genetic susceptibility to acute rheumatic fever

About 50% of people with ARF have carditis

About 30% of people with ARF have Sydenham Chorea

About 70% of people with Sydenham Chorea get dramatic acute onset OCD

 

PANDAS represents a group that doesn't have SC (i.e., doesn't have ARF or Carditis), that could have episodic tics or acute onset and dramatic episodic OCD. Episodic meaning has distinct starts/stops or dramatic exacerbations and falls (sawtooth pattern).

 

 

Thoughts?

 

Buster

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Curious, what's the percentage of PANDAS with tics only vs PANDAS with OCD only? I see the overlaps for it is there but dramatically higher for tics only with no OCD than vice versa.When we've done threads asking this before, it seemes to me more children experienced only having OCD with the absence of tics than vice versa.

Edited by Vickie

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While I follow the subset hypothesis trying to be conveyed here, I'm a little confused about the diagram in that:

if about 50% of people with ARF have carditis, the diagram would lead me to believe it is more like 80%

if about 30% of people with ARF have Sydenham Chorea, the diagram would lead me to believe that figure is closer to about 98%

 

Additionally, my understanding has been the same as Vickie's, that the dramatic onset of OCD is greater than the tics... but I don't have research at my fingertips at the moment to support that.

 

I like that you have the tics & sudden onset OCD overlapping as many of our children have both.

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Buster, this is very interesting, but I'm curious about the kids who have SC, like my son? He's diagnosed with PANDAS, and he does not have ARF (been ruled out).

 

Where was the literature that ruled out SC with PANDAS? I hadn't heard that one.

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While lacking a formal diagnosis for SC as I think her docs have focused more on the severe PANDAS, my DD11 also has uncontrollable movement issues & all the s/s of SC. I'm interested in reading that research as well.

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Additionally, my understanding has been the same as Vickie's, that the dramatic onset of OCD is greater than the tics...

 

 

i am surprised to see such a small portion of the pandas ellipse solely in the OCD category. do you only have OCD and not other symptoms like ADHD and asperger-like behaviors, etc because you are doing a diagram of "literature supported evidence"?

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i think that more would be tic onset for pandas...as when tics start...they are told its transient tics..if it progresses..they are then told it is TS by their doctor....and people are like sheep...

with ocd..i think waking up with sudden behavioral change, send more people(ie people here on the board)..to ask..how can this happen overnight???

 

i would think the SC shape should be more egg like..let it stick out a little and overlap with pandas, tics..as at one pt ds had trunk twisting

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Buster - great idea for the diagram. I agree that the circles do not seem to represent the information you have posted.

 

I was not aware that a diagnoses of SC, ARF, or carditis precludes a PANDAS diagnosis. I've read a few cases on the forum on kids who started out with a SC or ARF diagnosis and later developed episodic PANDAS symptoms. I understand that you are reporting the literature not individual cases. Perhaps that should be stated in your title?

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Very interesting and would be a great visual for all MD's to see. Question, though. Why episodic tics outside the bounds of PANDAS? I know some kids only have tics, but wouldn't that fall under pandas or are we looking at a whole different pathology (ie more resistent to treatment, etc.).

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Question, though. Why episodic tics outside the bounds of PANDAS? I know some kids only have tics, but wouldn't that fall under pandas or are we looking at a whole different pathology (ie more resistent to treatment, etc.).

 

I assume there is a group of episodic tics that have a tourettes-like cause (whatever that is! ideopathic?). or "normal childhood tics" (if you believe that one) unrelated to strep or infection.

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I just read something last night that was talking about how they have not "tested" for carditis, etc. in some of the defined pandas or SC kids---or something like that. I just remembered when I read it thinking---oh, then left that stone unturned---maybe I should be checking my daughter for carditis too!

 

Also, episodic tics would rule me out of pandas/pitand alltogether, because once her sudden explosion of tics, they have not been "episodic" whatsoever. Morphing from one thing to another, so maybe it was a month of jaw thrusting, head nodding, head shaking, finger flicking and sniffing, eye widening, blinking, etc .... that turns into mouth stretching/tongue thrust and curl, snapping head back, intense eye blinking, etc...so in our case "episodic" I still believe does not fit. She does have CamK 168, and high anit-lyso and anti D1 too. Hmmmm.....anyone else's tics not "episodic"? Sorry, I don't mean to take this thread on a rabbit trail :wacko:

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I am not sure how to interpret this visual? It is interesting, but I don't know how useful it is. These are all "sets of symptoms" that may, and often do, transition. For example, my son had chorea initially that was short-lived and which self-resolved, as we didn't know what the heck it was. Chorea was followed one year later by motor tics that began in the face, but gradually included head to toe muscle groups. The OCD hit about the same time. Then the OCD diminished and he was left with isolated tics, which eventually resolved. The typical chronic PANDAS behaviors (mood, anxiety, rage) were persistent for past several years. So, my point is, sometimes you have all symptoms at once. What is more useful to me visually is to see a "thermometer" type display of symptoms, where the "mercury" rises and falls to include the most severe symptoms near the top, to the less severe issues near the bottom?

Edited by Phasmid

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Hi folks,

 

Thanks for the feedback. I'll incorporate the modifications into the picture. It'll take me a bit to revise the document appropriately. What I got was that:

* I need to figure out size of bubble rather than just rough intersections (y'all are good analytics :-) )

* I need to calculate what % of carditis is associated with ARF

* Need to calculate size of OCD bubble (and sudden onset OCD within that)

* Need to adjust the tics/OCD balance (i.e., where are the PANDAS cases -- how many are pure tic)

* Need to add the comorbid/co-occuring symptoms of Sep Anxiety/Anorexia/... from the survey results.

 

I'll try a revision and repost.

 

Buster

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