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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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i haven't anssered yet.... its 1 or 2...

even though ds always gets very good grades the teachers would say if you could just get him to focus he would be in the honors class...and he was always a bit(not crazy crazy)more active than the other kids...but could/can equall sit an watch a movie,,(and he can sit better than other kids at times)...,and he always would touch the walls when walking by, a senory thing...(but not a certain number of times)....some oppostional behavior,(but i relate that more now to when he was getting sick)and when i see other brats my husband and i would think we had it made,(and handwriting gets good and bad)....,so at what point are things a young boy(who i think overall need more stimuli) vs a prelude....

but every exacerbation of tics was litterally overnight with more fighting and oppostitional stuff and bad writing....and not just a tic but 100-1000s of tics a day..i'm sure he's grumpy because there is an illness/he is physcially exhausted from moving...

Anyway MINI POLL 1 or 2

 

 

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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My d had a rock obsession very young, couldn't pass by a rock without picking it up, rocks in her pockets, rocks in our cars, rocks in the bathtub, ect. So, what did we do? We tried to make it normal. We made a rock garden right outside our door to at least try to keep some of them outside. What would a pedi say? Watch and wait... lots of little kids like rocks... And just like the PANDAS go-to docs describe, things get a little better and the baseline gets moved a nudge more away from normal. She's 10 and I will still find rocks in the washing machine or backpack on occassion.

 

Oh the rocks! My girls had rocks in their pockets all the time. For my dd7 though, when she was younger, her obsession was snow globes. She'd carry them around in a bag and was always lining them up and talking about them and about which ones she wanted next.

 

Susan

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It was definitely overnight onset at the age of 3. Happened immediately following a staph infection in her hand. Never had a tantrum prior to this and, up until then, she had been been very placid and underreactive and also sleeping through the night in her own bed since she was 6 weeks old. Also started with one tic (wiping her hand across her eyes), which I thought was due to an allergy back then I kept a journal when she was little so I can pinpoint to the week when this happened.

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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?

When my ds9 was 3, he would line up letter puzzles. It got to the point he wanted to spell book titles, ect and we would have to go to the store and buy more letter puzzles to have enough letters. We thought it was neat that he could spell and use letters but now we realize that was OCD. He is our oldest and we were sucked in. He also had transient tics at this time but we did not know what that was either. He had strep around that time; but his worst flare was at age 4 with a respiratory infection and was neg for strep then. This is why I feel the docs need to be careful of the strep and sudden onset thing. At the flare at age 4 he was completely nonfunctional, but at age 3 he just had quirks.

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This is why I feel the docs need to be careful of the strep and sudden onset thing. At the flare at age 4 he was completely nonfunctional, but at age 3 he just had quirks.

I think this is my point exactly, as our experience has been much the same. We very well may have had "sudden onset," or overnight behavioral changes, too, but when the child is as young as ours would have been -- likely under three -- and also entirely asymptomatic for strep, how could we or the physicians, even now, connect the dots?

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I also wonder about the little ones with the chronic ear infections.... I wonder how many get swabbed for strep? They're sick, unlikely to be cooperative, the ped is going to put them on abx anyway, so don't you think many docs don't bother?

 

I feel so guilty my girls were in daycare!

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I also wonder about the little ones with the chronic ear infections.... I wonder how many get swabbed for strep? They're sick, unlikely to be cooperative, the ped is going to put them on abx anyway, so don't you think many docs don't bother?

 

I feel so guilty my girls were in daycare!

My PANDAS daughter is the only one of my four children who did not do daycare, ever. And lots and lots of daycare kids (including my older 3) never get these kinds of health problems. Its not like you sent them into a leper colony!

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The NIMH website isn't quite up to date.

 

Dr Swedo clarified her position and diagnostic critieria in 2004 when she explained what "episodic course" meant (see my comments in the research papers).

 

She defined that episodic was a noticable beginning with a noticable remission and was not similar to the normal waxing and waning of symptoms associated with traditional OCD. Now it should be noted that she is defining a subgroup for purposes of research, the same pathogensis (cause) could apply to those who don't have the "sudden" onset or the episodic nature, but she's studying the smaller group first and then will broaden.

 

Buster

 

I just checked the NIMH diagnostic criteria. It does not say "sudden onset."

http://intramural.nimh.nih.gov/pdn/web.htm

 

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

 

1. Presence of Obsessive-compulsive disorder and/or a tic disorder

2. Pediatric onset of symptoms (age 3 years to puberty)

3. Episodic course of symptom severity

4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

Interesting! So am I mistaken in understanding that "sudden onset" was part of the initial criteria following Swedo's first study? It has certainly been cited to me by our psych more than once. Has the NIMH changed its criteria over the years as more information and evidence has come to light? Then why do we continually hear and see "sudden onset" identified in the press and by current practitioners like Leckman?

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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?

In my personal experience the words I would use is an acute onset. It did not happen overnight but in a few weeks my child was unrecognizable. Her OCD rituals became more and more bizarre and so did the duration of performing them. AT this point 7 years later I would have to say we are more Pitands then Pandas. I do believe that strep loaded the gun but now there are different bullets firing it.(for example myco.)

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Also from the NIMH site: Bolding mine

Q. What is an episodic course of symptoms?

 

A. Children with PANDAS seem to have dramatic ups and downs in their OCD and/or tic severity. Tics or OCD which are almost always present at a relatively consistent level do not represent an episodic course. Many kids with OCD or tics have good days and bad days, or even good weeks and bad weeks. However, patients with PANDAS have a very sudden onset or worsening of their symptoms, followed by a slow, gradual improvement. If they get another strep. infection, their symptoms suddenly worsen again. The increased symptom severity usually persists for at least several weeks, but may last for several months or longer. The tics or OCD then seem to gradually fade away, and the children often enjoy a few weeks or several months without problems. When they have another strep. throat infection the tics or OCD return just as suddenly and dramatically as they did previously.

 

Yes, the site is outdated...I had to go back and check because I couldn't remember...But so many doctors who don't know much about PANDAS do reference this site for information. Here we see that episodic was intended to include both those with sudden onset and those with sudden flaring of symptoms. I'm just saying that this does not seem as narrowly defined as I remembered it to be. Except for age of onset, (although we didn't notice the sudden worsening of symptoms until she was in that age range) it does seem to fit my daughter just fine.

 

But, the NIMH treatment recommendations are way, way off the mark!

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And what about the 3 years to puberty thing. I am tracing this back to when he was about 6 months old and he was slamming his legs into his mattress repeatedly. Or how about one yr of age when he had an obsession with my hair?

 

 

I just checked the NIMH diagnostic criteria. It does not say "sudden onset."

http://intramural.nimh.nih.gov/pdn/web.htm

 

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

 

1. Presence of Obsessive-compulsive disorder and/or a tic disorder

2. Pediatric onset of symptoms (age 3 years to puberty)

3. Episodic course of symptom severity

4. Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

5. Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

Interesting! So am I mistaken in understanding that "sudden onset" was part of the initial criteria following Swedo's first study? It has certainly been cited to me by our psych more than once. Has the NIMH changed its criteria over the years as more information and evidence has come to light? Then why do we continually hear and see "sudden onset" identified in the press and by current practitioners like Leckman?

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And what about the 3 years to puberty thing. I am tracing this back to when he was about 6 months old and he was slamming his legs into his mattress repeatedly. Or how about one yr of age when he had an obsession with my hair?

 

That is possibly an early onset, but at that age, its just dang hard to tell what is normal fascination with something newly discovered, and what is obsessive or compulsive behaviors. Babies have not learned much about controlling impulses and they tend to investigate new sensations/realizations/experiences by doing them over and over again.

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Hi - I checked sudden onset (1) but here's our rider for our situation with dd6....

 

her 1st recognised episode was the classic went to bed sunday night, nothing, and woke up monday with the whole shebang. With hindsight we had seen earlier episodes. Those too were sudden, just not severe.

 

Our possible PANDAS ds2 was also, I believe, sudden onset (separation anxiety) and when he gets ill now his behaviour/sleep/possible OCD stuff tanks within 3 days or so of being ill and very slowly improves over 2-3 months maybe.

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"She (Swedo) defined that episodic was a noticable beginning with a noticable remission and was not similar to the normal waxing and waning of symptoms associated with traditional OCD."

Buster

 

 

In our case there have been obvious times of "episodes" associated with illness (either sinusitis, strep in others, etc.) I believe it was M. Sokol's work on Pandas/Anorexia that tipped us off that our d might have Pandas. We could literally point to the week my d "became" anorexic. From our ensuing 3 months with the Eating Disorders Clinic --it was obvious that "typical" anorexia does not just come-on out of the blue one week!

 

The "sudden onset" issue is, as Buster pointed out, in contrast to the typical waxing and waning of OCD symptoms.

 

Sudden-onset may be helpful in moving towards a diagnosis, but as only part of the whole picture.

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The "sudden onset" issue is, as Buster pointed out, in contrast to the typical waxing and waning of OCD symptoms.

Well, then I guess it would be helpful if someone could fairly quantitatively describe what "typical waxinng and waning of OCD symptoms" looks like, so that a comparison between that and "episodic onset" of PANDAS symptoms could be made, especially for kids like mine who's primary behaviors are OCD-related.

 

DS13 had a "standard OCD" dx at 6, and yes, the therapist and later (at 7) the psych told us about the "waxing and waning," as did all the books we read. But nobody could tell us anything about what to expect in terms of the cycle length or the timing or anything. We expected it to coincide with the new school year and all the stresses of a new class, new teacher, etc., but it didn't. Then we thought maybe it would be maybe seasonally-related, but it wasn't. There didn't seem to be any rhyme or reason to the "waxing" of his symptoms, especially in the face of being asymptomatic to strep. But while he was being treated by both a therapist and a psych for "standard OCD," neither of them ever raised any flag about his "waxing episodes" being out of keeping with the "norm" in terms of when or how they appeared, duration, frequency, etc.

 

Had he been symptomatic for strep, we might've known earlier that he was experiencing a PANDAS exacerbation rather than a "standard OCD" waxing, but that wasn't the case. And even though the "waxing" would come about quite suddenly and his OCD would go from 0 to 60 in about 5 days, none of the "experts" in our medical care at that point in time seemed to think that was unusual or out of the "normal OCD range" for the disorder.

 

So, IF a direct relationship to an infectious agent (whether strep or myco p. or whatever) is not identified, is there any real, established criteria difference between a PANDAS exacerbation and an OCD waxing? Did our doctors just completely miss it?! Or is it perhaps SO common for PANDAS OCD to masquerade as "standard" childhood OCD in terms of the characteristics of the waxing that it's missed more often than not? :huh:

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