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"Sudden Onset" definition and studies


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I was just reading a post by EAMom responding to Swedo's Blogtalk radio interview. Then, I went back and listened to the interview. And what Eamon said is something that has ALWAYS bothered me. What...is sudden? It seems that even Swedo contradicts herself when describing PANDAS onset, and what is sudden to one person, may not be to another.

 

1) where are the studies that separate those that went from 100%, perfectly normal, non-quirky, no OCD tendancies EVER, to EXCORCIST overnight vs kids that developed pandas symptoms over several weeks?

Lets not let the researchers off the hook on that one. You can't say it only applies to one group, unless you study it compared to another group.

 

2) One day he didn't tic, the next day he did. So in that respect, who ISN"T sudden?

 

3) In Swedo's presentation at the Mind (I think its that one) she says that pandas, like SC, usually follows a course -a strep infection- then up to several months later - OCD - then - later still - tics or chorea. What's sudden about that? That is the FRIST incidence, and then on subsequent exposures/infections - the symptoms come closer and closer to the infection, until finally, you can predict that the child will soon culture positive based upon behaviors, before the throat is even sore. So, those that didn't notice anything until the "exorcist" syndrome - probably missed the first few exacerbation (and strep).

 

4)In her talk she mentions that Tanya Murphy has done studies of "mini exacerbations" - and these kids later have major episodes of pandas. If your kid has had mini episode, and 9 months later it is major episode - what is sudden about that? - you're excluded from "sudden onset". You had these symptoms before.

 

5)Most kids have symptoms at baseline, which get worse during exacerbation (and they may add symptoms) what's sudden about that?

 

6)"normal" childhood behavior and pandas, sometimes, look similar. Terrible twos (for us it was threes)..."anxiety related behaviors" that you attribute to stress(divorce, moving, new school, Daddy traveling, family death). You miss the initial onset, or next episode( because it looked "normal" - and now your child has some "baseline" ocd. You're now excluded from "sudden".

 

7) Kids hide stuff, and triggers, may be outside the home. It may be that the symptoms came on rather suddenly, but a parents awareness of the symptoms was more gradual.

 

8)She notes that in her first study - she made one criteria "episodic". And admits now that this should not be part of the definition. It was a criteria, that helped it make it more LIKELY that the child have pandas (so her study would have better statistics - which is fine) . JUST LIKE THE TERM "SUDDEN ONSET". If they want to use this term in diagnosing pandas kids - they need to define it better.

 

Its too subjective. More importantly - if you catch your child early in mini-exacerbation, as described by Murphy, or, at early stages of VERY first episode, where strep may be months prior to the first symptom, your child will go untreated, they don't meet the pandas criteria. And, unteated strep, untreated pandas, is not going to make it easier to treat next time. In the interview - she even cites studies in Brazil on SC patients- SC is still a problem due to the strains of strep there- and after 3-4 untreated episodes of SC, it is found to cause treatment refractory OCD. SC is the best model we have for pandas, so while there are no pandas studies on this yet, I think we have to assume that could be the case with pandas as well.

 

 

I'm not saying there isn't room for it in diagnosing. It makes it more likely that your child has pandas, like a positive strep titer. But, we certainly should not be excluding kids based upon on interpretation of this word. Every kid deserves a full work up to see if they have infections causing these behaviors, and in my opinion - immune work up that includes a CAM K II and anti-neuronals - to see if auto-immunity is likely playing a part.

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This is great and all so true! I don't have anything to add, really, other than I'm realizing my kid's situation is totally what you described in #4...or maybe #6...I've let things go in the past thinking 'well, it's not as bad as so-and-so...' or listening to others say 'all kids do that.'

 

Thanks for your thoughts. Really helpful.

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I, too, agree whole-heartedly. We're another family who wouldn't "qualify" under the strictest interpretation of "sudden onset," though I know I've read (though, admittedly not actually heard her say it) that she has adapted her criteria to include dramatic, sudden changes in Y-BOCs scores as well. Anyone have a link to actual paperwork or research attesting to that?

 

Also, via her 2006 Mind Institute video, of which I took notes, I read her "episodic course of symptom severity" a little differently, as she contrasts it to standard "wax and wane" of "regular OCD." One of the things that sort of tipped our psych's scales into agreeing with us that DS's OCD was not "regular" was exactly that: the episodic course of his symptom severity.

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http://www.latitudes.org/forums/index.php?showtopic=7478&st=0&p=60743&fromsearch=1entry60743

 

Here is an interesting similar thread from last year.

 

I remember having a similar conversation with a compatible level of frustration over sudden onset. I recall Buster telling me that it was PANDAS criteria because Swedo says so and she coined PANDAS what it is.

 

I agree, everything is sudden at some point before it.....was

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The lack of a clear definition of sudden onset makes me crazy too. It was this criteria that made me dismiss a possible PANDAS diagnosis initially. But I did have two doctors tell me that just because it wasn't an overnight disabling exacerbation, that that doesn't rule out sudden onset. It means that they didn't used to have PANDAS symptoms, but then one day they did. (even if they start out on the mild side) My dd's symptoms worsened over a period of 3 years with obvious exacerbations at different times. At each of those exacerbations we upped her anxiety medications until at the final exacerbation just before she was diagnosed with PANDAS, she had an exacerbation so severe that it completely incapaciated her, despite anxiety meds. Wish I could have saved her 3 years of ###### by knowing that sudden onset doesn't always mean overnight incapaciation.

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The NIMH's list of criteria dosen't actually include "sudden onset" (I just checked this after review the old post about this someone cited above)...However the very first paragraph on the page says "The children usually have dramatic, "overnight" onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection. "...and Swedo seems to be harping on this aspect recently (as EAMom pointed out from the Blogtalk interview). And, I'm wondering if it isn't some back room bargaining with the toruettes people - "you get the sudden onset folks, we get everyone else". I know, I'm jaded.

 

Having sudden onset being the lead characteristic delayed my son's treatment, for at least several months. And it took a conversation with another pandas parent, that has talked with hundreds of pandas parents, to convince me that what my son had was pandas. Her definition of the word sudden was "softer" than mine. When I think back now, one of my early appointments (3rd?) was with a Dr of integrative medicine and I said " I don't know what's going on, but I think its been going on for a long time". He dismissed me as having pandas (never brought it up, and actually quoted me when I told he a few months later that my son was DX'd as pandas)..Why did I say this? Because my son had "mini exacerbations" prior to his major explosion. He had 2 or 3 years where he would "go through a phase" or "grow out of" some behavior. Fear of water. bed wetting, adhd - that would not be an issue for 6-9 months, and then would. Sensory issues (that would come and go). The doctor did not question me from a stand point of "episodic"...nor did I accurately represent his OCD - because I thought it was "sensory integration" - so I was describing extreme irritability and intrusive thoughts by saying things like, "he's really bothered by sounds" - lille sounds, like me swallowing food, or when we reading next to each other in my bed at night - and I hit the button on my kindle that turns the page"

 

What my son had was 2 or 3 mini exacerbations - all fell within "normal" childhood behaviors. And then, he had the EXACT presentation found in SC - a strep infection (a poorly treated on - peri anal strep that I threw some antibiotic ointment on a few times, though just irritated from not wiping or washing well enough down there - he's a 9 year old boy who plays a lot of sports, never thought TWICE about this rash...was never asked about a rash by any of the 5 doctors I saw) several weeks after that he started "intrusive thoughts" his eating thing OCD - but he appeared to just be a kid that was bickering with sister and family at the dinner table as this developed. That, and bedwetting, went on for weeks before the tics started, and nightmares, and obsession with death, and insomnia. But even all of that - I could find excuses for (as could doctors) - its probably a transient tic, he's probably stressed about the death of his grandfather (that occurred months prior, whom he hardly knew because he lived on opposite coast, and was very sick for a very long time)...And add to that the fact that his tics were not that bad at home - he was doing them, but mainly when going from one activity to another, but once he started inon somehting, he didn't do them. And, according to his teacher, he didn't do it at school. Then one day, both she and I saw him and it was CRAZY his tics were out of control - his tics were triggerd by being in big open spaces.

 

By his THRID exacerbation - yes, I could see that within days all of his symptoms would happen at the same time, within a couple days, from a couple minor symptoms, to very pronounced and added about 7 new ones. But before that - as for timing, and what an actual symptom was, well, didn't actually know that bedwetting, or asking for the bathroom key, or nightmares, or that weird butt rash he had...were all symtoms, so I didn't even connect the dots. Certainly no regular doctor would.

 

I've been thinking of something - the Lyme quesitonaire I had to fill out...then I saw the same thing in a long document on "advanced topics in Lyme Disease" the same questionare - only it was weighed. I think it was very helpful to me just to understand how that disease is diagnosed by the doctors.

 

I think we could use on of those. Basically, if you are under a "4" you probably don't have lyme. Then theres the 4-10 range, and then 10+...where you almost certainly are dealling with lyme disease.

 

Some things can give you a 4 immediately - like a positive Western Blot. But, if you don't have any symptoms....you are still a 4. (and this is true - your body can create the antibodies, you test positive WB, but you have a superior immune function and your body has rid itself of the disease).

 

In my mind - that would be like a positive Cunninghams' test. Add in Bedwetting (value=1)that coincides - you're a 5, add in OCD that started at (around) the same time (weight this higher, maybe a 3 or 4) you're now an 8, add in a positive strep titer, or positive lyme test(2) = you're a 10 - probably have pandas.

 

I'm going to talk to someone with access to some medical advisors on this, and see if we can put something together.

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See pages 9-11...its page 11 where the "weighted values" come in. First two pages are symptoms. Page 11 is the Diagnostic Checklist.

 

So our symtoms - ie...tic, betwetting..(I think this part already exists in several forms - Dr K's site as mentioned abotve, or Dr Bs) and then last page you combine symtoms with tests (and perhaps the presentaion of the symptoms - "over night" , "over several weeks", or episodic course, following strep infection...

 

This lyme document is GREAT - its what I envision the "White Paper" for PANAS should be (that I believe we will never see) .

 

http://researchednutritionals.com/FactSheets/Burrascano's%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

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Great posts Norcalmom!

 

I do find it ironic that when parents new to this forum post their kids' stories/symptoms wondering if their children might have PANDAS, the other PANDAS parents don't seem to have any problem correctly identifying who has PANDAS (later confirmed by specialists and/or response to appropriate treatment). Maybe you have to live through it to be able to see it? But, the average doc seems to have no idea how diagnose PANDAS.

 

Yes, I do wonder if Swedo is latching onto concept of "overnight onset" so the "average doc" can easily distinguish that child out from one with regular OCD? But...I do fear that too many non-sudden onset PANDAS kids will be left behind.

Edited by EAMom
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We had the mini-exacerbations that would come from nowhere & then go away...until we had the BIG ONE that didn't go away. By the time we figured out it wasn't going away, I wouldn't say it happened suddenly. Some symptoms did, which since ds was being bullied a bit at school, I attributed to that...and looked for other things I KNEW to look for (diabetes, anemia, eye issues, sensory). Maybe what we need to do is focus more on awareness for parents (like the Got Strep campaign), so that when THEY notice the differences, the doctors can't ignore it. I'm thinking that even if you had a sudden onset, that's really going to fly up red flags for a mental illness vs. anything physical. Maybe the SUDDEN ONSET is to keep everyone from running into the dr when all this PANDAS stuff finally hits mainstream. Or to keep parents from being scared of strep (like we are!). They do mention episodic course in places, but the thing is, by the time you're realizing that they run in episodes (or if you're like us & go 1.5 years WITHOUT an episode after tonsillectomy), you already needed to have treated your child. There was something it seems that said it took 2 exacerbations to dx it...but in the study they just want one. I want to try to find info about when the autism awareness programs started and if that's when the autism rates started rising. The trouble would be, how do you get the docs to differentiate between ASD & PANDAS if it's a toddler? They look so similar when in exacerbation, but treatments are different. AND how much would it hurt to run a course of abx on a suspected ASD case to look for improvements. Okay...I'm starting to ramble...brain is scrambled a bit.

 

And where is that white paper???? I forgot all about it.

Edited by SarahJane
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We had the mini-exacerbations that would come from nowhere & then go away...until we had the BIG ONE that didn't go away. By the time we figured out it wasn't going away, I wouldn't say it happened suddenly. Some symptoms did, which since ds was being bullied a bit at school, I attributed to that...and looked for other things I KNEW to look for (diabetes, anemia, eye issues, sensory). Maybe what we need to do is focus more on awareness for parents (like the Got Strep campaign), so that when THEY notice the differences, the doctors can't ignore it. I'm thinking that even if you had a sudden onset, that's really going to fly up red flags for a mental illness vs. anything physical. Maybe the SUDDEN ONSET is to keep everyone from running into the dr when all this PANDAS stuff finally hits mainstream. Or to keep parents from being scared of strep (like we are!). They do mention episodic course in places, but the thing is, by the time you're realizing that they run in episodes (or if you're like us & go 1.5 years WITHOUT an episode after tonsillectomy), you already needed to have treated your child. There was something it seems that said it took 2 exacerbations to dx it...but in the study they just want one. I want to try to find info about when the autism awareness programs started and if that's when the autism rates started rising. The trouble would be, how do you get the docs to differentiate between ASD & PANDAS if it's a toddler? They look so similar when in exacerbation, but treatments are different. AND how much would it hurt to run a course of abx on a suspected ASD case to look for improvements. Okay...I'm starting to ramble...brain is scrambled a bit.

 

And where is that white paper???? I forgot all about it.

It is not their job to make sure everybody doesn't go running to where ever...There job is to study and report results as objectively as possible. I really resent that politics is getting this so messed up. Just learn and report what you've learned already! (that was addressed to medical scientists)

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  • 4 months later...

EAMom sent me a reminder about this post and in light of the recent presentations at the IOCDF, I thought we should pick this one back up.

 

What the heck is sudden onset?

 

If I were some researcher who didn't believe in PANDAS, I'd wait until this was the new established "criteria" and then attack it as "ill defined" and then prove it didn't occur because the kids in my sample who had onset overnight, didn't separate from kids who had onset over a week. If you wanted to be a PANDAS-naysayer, nothing is easier than to attack definitions.

 

I look at Kurlan's 2008 article where he painstakingly says that he met the published criteria of 1998 -- did he meet the criteria of Swedo's 2004 "separating fact from fiction" article -- nope -- he stuck with the original definition and attacked episodic.

 

I think Swedo and Murphy and others are going to have to publish something much more precise to get around this.

 

Here's my try (this is just a draft to get your comments):

 

"Sudden Onset means a change of symptoms from a baseline of functioning behavior to an inability to function over the course of 1 month or less. This abrupt change of behavior may be measured using standardized instruments such as a change in CYBOCS of +16pts. A change of 16 pts represents a dramatic shift in symptom severity from a child who was functioning (perhaps with some quirky behavior/compulsions) to one unable to function (fairly constant imparement, "possessed", everyone on eggshells, unable to function in a school setting)."

 

Here's a try at a graph:

SuddenOnset.jpg

 

And for relapsing/remitting:

 

RelapseRemit.jpg

 

 

Thoughts? I realize a lot of cases may not meet the above. But does the above help better than "sudden onset"?

 

Buster

edited based on comments below from Vickie and EAMom.

 

 

sudden onset is too subjective. More importantly - if you catch your child early in mini-exacerbation, as described by Murphy, or, at early stages of VERY first episode, where strep may be months prior to the first symptom, your child will go untreated, they don't meet the pandas criteria. And, unteated strep, untreated pandas, is not going to make it easier to treat next time.

Edited by Buster
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