Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Buster

Venn Diagram -- thoughts?

Recommended Posts

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.

 

Oh, on the why PANDAS is not SC, this is in the definition of PANDAS. While I'm sure a lot of us wonder if PANDAS is a mild form of SC, Swedo specifically excluded the definition of PANDAS if there is a viable diagnosis of SC. So if a child had subcutaneous nodules and carditis or the writhing chorea or fit the JONES criteria, then definitionally they wouldn't have PANDAS.

 

I'm still working on the picture (which I know isn't quite right) and appreciate the comments to help it get right. One great thing about this forum is there's a lot of knowledge here and I thought a visual like this would be good to collect what we've found.

 

 

Buster

Share this post


Link to post
Share on other sites

Techinically, "carditis" means "inflammation of the heart". Here's a link. http://www.wisegeek.com/what-is-carditis.htm

 

So, is the area of carditis mean all non-strep caused carditis? In that case the area of carditis outside ARF should be much larger.

 

You give Buster feedback on here? I woulda assumed that you got 1st crack at reviewing all his stuff as "wed-itor in chief"! ;)

 

(I don't even post until I get my better half's approval... in writing.)

Share this post


Link to post
Share on other sites

Round 2:

 

trial9.jpg

 

I revised the picture based on the feedback. It turns out to be much harder to draw than I thought. Size is particularly difficult to represent while also covering set union/intersection.

 

Here's what I'm trying to show:

 

1. ARF usually has mitral valve involvement

2. SC can be a sole identifying trait in ARF and SC appears in about 30% of ARF cases

3. in about 70% of SC cases, there is onset of OCD

4. There's an interesting paper from Brazil that says OCD doesn't happen in ARF without SC (this could be a sampling issue, but interesting)

5. Not all tics are episodic

6. Not all OCD is sudden onset/episodic

7. Some PANDAS and PITAND could be outside the sudden onset (this was Pavone's paper on chronic PANDAS)

 

The incidence of ARF is tricky. About 4% of people are genetically susceptible, but incidence looks like more .3% in US and 1-2% world wide.

OCD incidence is quoted several places as about 2-3% in the 5-12 age group

Tic incidence is quoted several places as about 4%

Co-occurance of OCD and Tics is listed as about 1%

 

Buster

Edited by Buster

Share this post


Link to post
Share on other sites

Now the greatest outcome of this venn diagram would be to then try to use it to figure out which treatments worked best for which subsets, etc......

ie., if you have ocd AND SC--"x" was most helpful

if you had tics only "Y' was most helpful

if you had NOT sudden onset.....you know, it could go on and on, but in the end, this is what wee are looking for. I don't really give a rats **@*# what it ends up being called, because it's NOT one-size-fits-all here---but how do we help the symptoms we each do have.

Buster, I think this is a great tool to get that started!

Share this post


Link to post
Share on other sites

JMHO..feeling a little left out....

 

i think the panda/tic circle need to be more overlapped and not nessaricly with other items..maybe sc......as i sit here and ds is playing a computer game...face pucker.tics that started just before christmas(thought he was non-panda).....does great in school has friends...just confirmed with mono on monday(strep pos 4 weeks prior)

ds 3 coming out from exposure, only blinking when i'm mad at him.....

ds10..my original panda..tics wwaayyy down after parasite cleanse....rocking out the school grades(reading just came up 2 grade levels after parasite cleanse..but even at that he was still manageing Bs and above with no help from me at all as i am too busy)

 

i don't think people are pursueing pandas with just tics..they are sent down differnt path by docs...and may not be as annyoing by parents to pursue otherwise.....

ie..my nephew..had mild eye blinks all of early childhood(they thought/think i a crazy :blink: and so what)changed to a couple of other minor tics..had a mild head nod the last couple of years..came down with stomach bug/enzyme/condition in septermberish..and other digestion problems...treating that and tics were gone when i saw him for a weekk over thanksgiving break!!!!!!! but i am crazy (he's 13 and mind you the tics where mild)(oh ,,great, smart kid)

 

sorry for the ramble Buster

Edited by Fixit

Share this post


Link to post
Share on other sites

Oh, Buster,I can see how tricky that probably was to put together!I, admit, it's a little confusing and overwhelming at first but if you know what your child is and what you're looking for, you can find it.I found my son...he's PANDAS sudden onset OCD, that's it for what's on the diagram.

 

I think, realistically, with all these circles, it may be near impossible to get the exact percetange represented w/o looking like a kaliedoscope.I suppose it shows all the similarities these disorders have.

Share this post


Link to post
Share on other sites

love visuals, but not sure the venn diagram will work. I see where you are going. At first glance I thought you were trying to show the % of symptoms the disorders shared...but your list shows you are describing the percent of people in each group that are in another group as well. I think it is confusing because of that as well as

the symptoms and the dx is blurry. You treat sudden onset OCD the same as ARF. I think of ARF and Syndenhams Chorea as specific well defined diseases, (like pandas) but tics and OCD as symptoms, that belong in a number of groups. OF course there is lots of OCD and tics that don't have a know cause, maybe they should just have a separate bubble - outside the whole diagram since you can either have the diagram show the amount of people that have the same symtoms or the amount of symtoms share by each disorder. Call them "traditional OCD" and " Tourettes"

 

See where that is confusing...Tourettes is not in the group. but it shares the same symptoms....

 

ADHD and Lyme should also be on there.

 

MAybe a "features list" would work..(I'm buying a new car...so I've been looking at these and comparing what each car has or dosen't have, like the consumer reports of neuro pschologicical disorders!) It depends on if you goal is to show the symptoms they share, or the % of people in each group compared to the other group. I don't think you can get it both ways, and that is why the diagram is confusing.

 

Check out this little video someone sent me a few weeks ago. Maybe you've seen it. I love this guy. Maybe you will come up with something like this for us?!

 

 

enjoy.

Share this post


Link to post
Share on other sites

I think I should have explained the diagram better. I'm showing where a person shows up.

 

A person can have OCD and have Tics.

 

What I'm trying to do is size where someone fits.

 

Take my daughter (for example), she could have been in SC (with sudden onset OCD) if we considered her movement disorder to be chorea. Or she'd be in the PANDAS + sudden onset OCD group and then we'd have to decide whether her vocal grunt is a tic or not to know if this would be in the very intersection of PANDAS + sudden onset OCD + episodic tics.

 

 

Tourettes is in the picture (I just didn't label it). It would be a subset of Tics with overlap of OCD -- but seems not the sudden onset OCD group.

 

I'll keep tweaking it and thanks for the comments.

 

 

Buster

 

 

love visuals, but not sure the venn diagram will work. I see where you are going. At first glance I thought you were trying to show the % of symptoms the disorders shared...but your list shows you are describing the percent of people in each group that are in another group as well. I think it is confusing because of that as well as

the symptoms and the dx is blurry. You treat sudden onset OCD the same as ARF. I think of ARF and Syndenhams Chorea as specific well defined diseases, (like pandas) but tics and OCD as symptoms, that belong in a number of groups. OF course there is lots of OCD and tics that don't have a know cause, maybe they should just have a separate bubble - outside the whole diagram since you can either have the diagram show the amount of people that have the same symtoms or the amount of symtoms share by each disorder. Call them "traditional OCD" and " Tourettes"

 

See where that is confusing...Tourettes is not in the group. but it shares the same symptoms....

 

ADHD and Lyme should also be on there.

 

MAybe a "features list" would work..(I'm buying a new car...so I've been looking at these and comparing what each car has or dosen't have, like the consumer reports of neuro pschologicical disorders!) It depends on if you goal is to show the symptoms they share, or the % of people in each group compared to the other group. I don't think you can get it both ways, and that is why the diagram is confusing.

 

Check out this little video someone sent me a few weeks ago. Maybe you've seen it. I love this guy. Maybe you will come up with something like this for us?!

 

 

enjoy.

Edited by Buster

Share this post


Link to post
Share on other sites

Buster---PM'd you..

 

I think I should have explained the diagram better. I'm showing where a person shows up.

 

A person can have OCD and have Tics.

 

What I'm trying to do is size where someone fits.

 

Take my daughter (for example), she could have been in SC (with sudden onset OCD) if we considered her movement disorder to be chorea. Or she'd be in the PANDAS + sudden onset OCD group and then we'd have to decide whether her vocal grunt is a tic or not to know if this would be in the very intersection of PANDAS + sudden onset OCD + episodic tics.

 

 

Tourettes is in the picture (I just didn't label it). It would be a subset of Tics with overlap of OCD -- but seems not the sudden onset OCD group.

 

I'll keep tweaking it and thanks for the comments.

 

 

Buster

 

 

love visuals, but not sure the venn diagram will work. I see where you are going. At first glance I thought you were trying to show the % of symptoms the disorders shared...but your list shows you are describing the percent of people in each group that are in another group as well. I think it is confusing because of that as well as

the symptoms and the dx is blurry. You treat sudden onset OCD the same as ARF. I think of ARF and Syndenhams Chorea as specific well defined diseases, (like pandas) but tics and OCD as symptoms, that belong in a number of groups. OF course there is lots of OCD and tics that don't have a know cause, maybe they should just have a separate bubble - outside the whole diagram since you can either have the diagram show the amount of people that have the same symtoms or the amount of symtoms share by each disorder. Call them "traditional OCD" and " Tourettes"

 

See where that is confusing...Tourettes is not in the group. but it shares the same symptoms....

 

ADHD and Lyme should also be on there.

 

MAybe a "features list" would work..(I'm buying a new car...so I've been looking at these and comparing what each car has or dosen't have, like the consumer reports of neuro pschologicical disorders!) It depends on if you goal is to show the symptoms they share, or the % of people in each group compared to the other group. I don't think you can get it both ways, and that is why the diagram is confusing.

 

Check out this little video someone sent me a few weeks ago. Maybe you've seen it. I love this guy. Maybe you will come up with something like this for us?!

 

 

enjoy.

Share this post


Link to post
Share on other sites

Hi Fixit,

 

It's a definitional item. Swedo said that existance of chorea is exclusionary for PANDAS. It's possible they are related but you have to have chorea for SC and you can't have chorea for PANDAS.

 

Buster

 

thanks buster..looks good...

excuse my ignorance..but pandas and sc cant overlap..??

Share this post


Link to post
Share on other sites

If you can't have chorea with PANDAS.......what causes the piano playing fingers so many PANDAS kids have? I thought that was considered chorea? Atleast that is what Dr. Latimer told me. Okay...confused.

Share this post


Link to post
Share on other sites

Hi P.Mom,

 

The fine piano playing movements in stressed stance are referred to as a choreiform movement. Although the term sounds like chorea, it actually has nothing to do with chorea. It's really unfortunate that the two terms sound so similar as this has probably caused a lot of confusion. Dr. Latimer commented at the IOCD conference how often pediaticians get confused there. You can absolutely trust her comments as she is extraordinarily knowledgable about choreiform movements and separating from chorea.

 

Bottom line, chorea is exclusionary for PANDAS (meaning if you have Sydenham Chorea, then you don't have PANDAS). Much like if you have ADEM, then you don't have Tourettes syndrome (because by definition).

 

Buster

 

 

 

If you can't have chorea with PANDAS.......what causes the piano playing fingers so many PANDAS kids have? I thought that was considered chorea? Atleast that is what Dr. Latimer told me. Okay...confused.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...