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Does "Sudden Onset" Criteria Measure Up?  

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  1. 1. How did you or your child's PANDAS make itself known?

    • Literally overnight onset -- one day he/she was fine, the next he/she was a mess!
      21
    • Overnight exacerbation, but had exhibited previous signs or "quirks."
      18
    • Previously received another diagnosis (TS, OCD, etc.), but increase or exacerbation in behaviors brought us to PANDAS.
      11
    • Nothing appeared "sudden" at all (either initially or in exacerbation), but symptoms/behaviors overall point to PANDAS.
      4


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JMO....its ALL related to illness be it strep, lyme, celiacs etc....

 

and the dam docs look at you and peg you into a box(if it has feathers its a duck)(well, did you ever think you've been calling it a duck for 50 years and since you haven't been able to cure it maybe its really an osctrich)....and say wax and wane are typical... TYPICAL DURING AN ILLNESS......good days, bad days rise and fall.....but the question is what is making this person sick....what happend to trigger this illnesss...and the docs have a hard time, listen to the crazay parents who said ...you know he was sick last week...doc says "no correlation" and unless you as parent can force a docs hand...you are now on journey that might take years, and as your child's system gets strong it gets milder and then the reverse. And the problem is they give you chlonidine and ssri's but they are not treating the illness.....

 

Honestly, I agree with you! They've traditionally labeled sets of behaviors and expected us to accept that as a diagnosis when, in truth, it isn't; it's just a label! :)

 

Sorry i'm just needed to vent today!!!

 

Hey, that's what we're here for! :D

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It's the y-boc scale that measures OCD. Swedo has a great presentation that she gives that was one of a few light bulb moments for me - LLM has that one - hopefully she will post the link, or I'll pull it up at work tomorrow.

 

I knew my ears were ringing for a reason...

here's the link to the Swedo presentation

Dr. Swedo webcast Fall 2008 autism conference

Progress and Pitfalls & Notes on PANDAS

http://www.autism.com/danwebcast/video-lis...erence=SanDiego

 

The link brings you to a complete list of that day's presenters. You have to scroll about half way down to find her particular presentation. It's one one of the best 30 minutes I've ever spent learning about the disease and it cleared up a lot of confusion for me. Lots of aha moments...

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my son had extreme behaviors in oct/nov '08 at age 4.5. most other people had explanations for -- "i was babysitting my friend's baby", "he's just a boy", "he's testing" -- no, he's whacked and there's got to be a better reason! my favor was his ped "i think you'll find the strep and the behavoirs are not related" -- active strep culture, ASO 898.

 

he had a strong cognitive inflexibility issue at my cousin's wedding the prior july on a trip across country. looking back, i know i described him as "more tantrum prone than most" and said he "had a defiant streak". i now believe that is all related, it just was mild and occasional and easily seen as normal 2, 3 or 4 year old behavior.

Edited by smartyjones
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Could be way off... but here's my understanding of the difference between the normal waxing/waning cycle associated with classic OCD or Tourette's and the sawtooth pattern described for PANDAS / PITAND.

 

Normal waxing and waning is like regular ocean waves - the sine-wave pattern we're all familiar with from trigonometry. Ocean waves can vary in timing and intensity, but they still have the same general pattern of gradual rise and fall. This is what some local folks whose kids have classic OCD have described to us.

 

PANDAS is like the tsunami that comes out of nowhere, with little warning, overwhelming in intensity, swamping everything in its path. This is definitely what our son experienced with his exacerbations.

 

This may be a simplistic analogy, but it's the way I've always pictured it in my head. (I really need a better way to occupy my thoughts, eh?)

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Could be way off... but here's my understanding of the difference between the normal waxing/waning cycle associated with classic OCD or Tourette's and the sawtooth pattern described for PANDAS / PITAND.

 

Normal waxing and waning is like regular ocean waves - the sine-wave pattern we're all familiar with from trigonometry. Ocean waves can vary in timing and intensity, but they still have the same general pattern of gradual rise and fall. This is what some local folks whose kids have classic OCD have described to us.

 

PANDAS is like the tsunami that comes out of nowhere, with little warning, overwhelming in intensity, swamping everything in its path. This is definitely what our son experienced with his exacerbations.

 

This may be a simplistic analogy, but it's the way I've always pictured it in my head. (I really need a better way to occupy my thoughts, eh?)

 

Worried Dad,

 

I have to say, that I appreciate, that you occupy your thoughts with this - allthough I an SO sorry, that you (too) have to !

 

And I really appreciate too, that you took the time to write it down !

 

It is a very easy understandable picture - and as far as I have been able to understand the litterature on the subject and picture it in MY head : A very precise picture/description too -

 

Best wishes to you all -

THANK YOU !

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gather and throw stones

broken bits of leaves during the walks

Close the doors of stores

all these manias began early, when she was little, and was constantly ill as a child: otitis, sore throat ...

But everything has got worse around nine years when appeared many compulsions:

wear and take off shoes many times

turn off and turn on the lights

enter and exit through the door several times before leaving or returning home

roll of candy on the pillow many, many times in an exact order, to consume them

and many other rituals.

is a year that have returned some of these .... and they reappeared suddenly, not gradually.

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Could be way off... but here's my understanding of the difference between the normal waxing/waning cycle associated with classic OCD or Tourette's and the sawtooth pattern described for PANDAS / PITAND.

 

Normal waxing and waning is like regular ocean waves - the sine-wave pattern we're all familiar with from trigonometry. Ocean waves can vary in timing and intensity, but they still have the same general pattern of gradual rise and fall. This is what some local folks whose kids have classic OCD have described to us.

 

PANDAS is like the tsunami that comes out of nowhere, with little warning, overwhelming in intensity, swamping everything in its path. This is definitely what our son experienced with his exacerbations.

 

This may be a simplistic analogy, but it's the way I've always pictured it in my head. (I really need a better way to occupy my thoughts, eh?)

 

What i was saying in my statement is...once you have the condition be it dramatic like a tsunami like my son or more gradual...there is ebb and flow...and that may go on for months or years, because it's hopefully not killing you, it's just irritatting the ###### out of you body...and until your body itself, in rare occasions heals itself, our you find someone to help you it will do that for months or years..

An example is 1 neuro i see down here..does not believe in Pan or pit...her own child has ts.....overnight onset, and even she as a neuro, who knows what ts is and says her husband has it, ran to the emergency room...Because she was scared, even though she "knowsz' she couldn't help him....

Her son is now 15ish and still has ts, but his onset was the worst it ever was and is at it's best now and maybe he will always because she just accepting that there is no correlation to onset with ANYTHING ELse????(

REALLY!!???!!!!?????

quote form HOUSE.went something like this.."do you think they believe us?? of course, we're the doctors, there gonna believe what we tell them"

so as a patient herself .....she's like..ooohhh, o.k.

Now, she also believes it because her husband tics???? he has pand/pit too !!!! and as your body hopefully matures and builds more resistance it goes away (those miraculous cases where people have ocd, ts, anorezica for3, or 5 or 7 years and then its just gone, AGAIN , REALLY !!!???!!!????!!!) or your system never quite kicks what ever its fighting completely as you go into adulthood and you still have lingering signs of your past..or for some unfortunate people there system is so wacked it never gets better or continues to deteriorate......

 

And just like any other disease...there are varying degrees of psorisiys, eczema, allergies, thyroidism, and they all flare and get better and some remit completely!!!!that 's the exciting part.

 

I'm just re-explaining my statement. I guess i'm fired up today.

 

and the dam docs look at you and peg you into a box(if it has feathers its a duck)(well, did you ever think you've been calling it a duck for 50 years and since you haven't been able to cure it maybe its really an osctrich)....and say wax and wane are typical... TYPICAL DURING AN ILLNESS......good days, bad days rise and fall.....but the question is what is making this person sick....what happend to trigger this illnesss...and the docs have a hard time, listen to the crazay parents who said ...you know he was sick last week...doc says "no correlation" and unless you as parent can force a docs hand...you are now on journey that might take years, and as your child's system gets strong it gets milder and then the reverse. And the problem is they give you chlonidine and ssri's but they are not treating the illness.....
(and that's why all those meds have minimal effect at best...they are on the wrong path!!!)
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5:30 PM on May 12th 2009 (in a hip hop dance class). One minute before that Ds5 was fine. His twin 3:45PM May 22nd. 2009 (at the mall). One minute before that Ds5 was fine!

 

Of course...now "fine" is not part of our vocabulary. "better" is what we hope for and work towards.

 

Kari

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Close the doors of stores

 

My own "light bulb moment" just now. DS, at 3, would rage if he wasn't ALWAYS permitted to use the handicapped panel/button to open doors . . . to his preschool, to the mall, to a store, anywhere public. If someone was right in front of us and was polite enough to hold the door open for us, he would throw himself to the ground and refuse to move until the door was "all his" again. We knew we didn't see any other kids of his age having this issue, but we didn't know it could be tied to anything of note, either. It just seemed as though it was a part of who he was during that stage of his development.

 

Eventually we took to just hanging back if someone was close ahead of us, waving off their polite offer to hold the door open for us with an, "Oh, that's okay, thanks anyway. He likes to work the door." :)

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In our dd9's case, I would say overnight. When she was 7.5 her symptoms came on literally overnight following a 102 degree fever. We went downhill fast and had to hospitalize her to get her stable.

 

Jan 23rd 2008 3pm (age 7.5 years) she had a screaming tantrum (a few minutes b-4, she said she felt "cold") just before I realized she had the FEVER. After the 2-3 days of FEVER her behavior continued to deteriorate, with significant downward spirals after 2 tooth extractions (for orthodontic reasons) in late Feb 08 and early March 08. AFter the 2nd extraction, her anorexia nervosa became severe/full-blown, suicidal statements, considered herself a "bad person"... a completely different child. She was down to 1 small meal per day, I'm guessing about 300 calories daily. Before the extractions, symptoms were somewhat more subtle, lots of tantrums, stopped eating breakfast, defiance, social anxiety (stopped playing with kids at school)...I attributed the changes to dh travelling a lot that month and to dd being upset that she had to go to speech therapy (I later realize, it was PANDAS that made her extrodinarily anxious about speech!)

Edited by EAMom
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Close the doors of stores

 

My own "light bulb moment" just now. DS, at 3, would rage if he wasn't ALWAYS permitted to use the handicapped panel/button to open doors . . . to his preschool, to the mall, to a store, anywhere public. If someone was right in front of us and was polite enough to hold the door open for us, he would throw himself to the ground and refuse to move until the door was "all his" again. We knew we didn't see any other kids of his age having this issue, but we didn't know it could be tied to anything of note, either. It just seemed as though it was a part of who he was during that stage of his development.

 

Eventually we took to just hanging back if someone was close ahead of us, waving off their polite offer to hold the door open for us with an, "Oh, that's okay, thanks anyway. He likes to work the door." :)

 

YES!!!!! We too had to wait until the door closed so that my son could open it. Especially handicapped doors and unique doors - like the bi-fold doors at CVS that not only open when you step on the magic spot, but then open in a way no other automatic door does. Had a fascination with doors since before he could walk - also around the time he had his first eye blink tic that lasted 2 days. The family laughed in a polite way that made you feel defensive and strangers just thought he was quirky. it's one of those oddities that made me google asperger's more than once. We were spared the temper tantrums you describe, but we too had to adhere to letting him wait so he could be the one to make the door open again. (he is finally able to observe social etiquette - tho he still enjoys the automatic doors, he's now able to deal with it if someone else gets there first).

 

That's why I answered "overnight, but with previous quirks". Because we'd have weird 10 day "episodes" of rages, ocd-like behaviors, clumsiness in toddlerhood...could never point to an illness trigger, but he was also known to have double ear infections without complaint. So who knows. But then on September 13, 2008, our world changed - three days after strep and scarlet fever.

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EAMom-

Our dd, at age 8, had such a similar onset. Initial overnigh onset of stomach aches, Tantums, defiance, social anxiety (never ever an issue prior), restrictive eating and anxiety. We attributed to other stressors, as well. Post H1N1, acute onset that was totally debilitating.

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YES!!!!! We too had to wait until the door closed so that my son could open it. Especially handicapped doors and unique doors - like the bi-fold doors at CVS that not only open when you step on the magic spot, but then open in a way no other automatic door does. Had a fascination with doors since before he could walk - also around the time he had his first eye blink tic that lasted 2 days. The family laughed in a polite way that made you feel defensive and strangers just thought he was quirky. it's one of those oddities that made me google asperger's more than once. We were spared the temper tantrums you describe, but we too had to adhere to letting him wait so he could be the one to make the door open again. (he is finally able to observe social etiquette - tho he still enjoys the automatic doors, he's now able to deal with it if someone else gets there first).

 

It's a little specific, I suppose, but given the apparent commonality of the experience, maybe it should be added to the list of signs to watch for in your child: "Does your child like to control doors, especially the automated variety?" :P

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While I have heard of, and personally know one child who quite literally woke up one morning with severe PANDAS symptoms after having shown few if any signs of her hallmark symptoms (separation anxiety, OCD) prior to that day, our own experience has been one in which the disorder crept in more gradually, with only the latest, nastiest exacerbation having driven us forward in our research until we found PANDAS. From reading posts here for the last few months, it seems that this is not an uncommon experience among PANDAS families.

 

So I thought I would start another poll: would your child meet a "sudden onset" diagnostic criteria, or did your experience begin too young, too quiet, or too slowly for that terminology to appear applicable to the standard physician?

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