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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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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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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?

 

I selected previous diagnosis since my girls both were diagnosed with sensory processing disorder (at ages 3 and 4). If they had sudden onset, they were too young to tell since they were changing so rapidly when they were 1 and 1 1/2 years old. In retrospect, the sudden onset probably would have been when dd8 started pulling out her hair and sticking her fingers down her throat. But these are some of the odd things about her that lead us to sensory processing disoride.

 

Susan

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For us we don't have a specific date per say...rather a time frame of a few weeks where her OCD built up. Last year, her teacher felt that upon returning from Easter Break she was a changed child.

 

She did have some "fussiness" about her personality, and I do believe that she had a prior unrecognizable PANDAS episode at around 3 1/2 years.

 

This time, it seems to be the same thing...symptoms kind of slowly ramping up...but we caught it early...and full strength antibiotics and prednisone had definitely stopped her from getting worse...school has not reported any problems yet.

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This was a tough one. In the end I had to go with the sudden dramatic change.

 

Neither of my girls had any psychological issues, and were both thriving prior to pandas. Did they have any "quirks", well I guess, one was shy and one a bit of a perfectionist. Actually, they were both growing out of those issues and really blooming when pandas hit.

 

They both had an overnight onset, one, however was milder. My little one was debilitated with ocd (among other pandas issues) within a week of overnight onset. My older one also had overnight onset (they both had culture positive strep) and had great difficulties, but was able to function more/less until more severe exacerbation post flu.

 

I certainly don't believe in ruling out pandas if one doesn't have, or can't remember a sudden onset- however, the sudden change is a HUGE red flag, one that parents and pediatricians can easily grasp, so I am not sure it should be dropped from the description.

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For us, the symptoms were always there, with an unmistakable explosion linked to +strep tests. I believe the onset was in infancy, but its easy to say at that age that "Of course, they are cranky/irritable when they are ill." And when they improve on abx, its just that they are feeling better now.

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This is a great poll!!!

 

I think when your child's symptoms begin in pre-school, it is so hard to tell. 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.

 

I can recall identifying a point in time where the symptoms became much worse, but there were plenty of symptoms before that week that we had already started medicating. Did something change? Is it the meds? (Turns out this was a couple weeks after she probably had myco-p.) I had heard of PANDAS before, but the emphasis on "sudden onset", overnight from normalcy to totally nuts, made me say nope.

 

How about this question... do children with non-PANDAS OCD exhibit behaviors in pre-school? I thought the onset of "regular" OCD was 10, not 3?

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I certainly don't believe in ruling out pandas if one doesn't have, or can't remember a sudden onset- however, the sudden change is a HUGE red flag, one that parents and pediatricians can easily grasp, so I am not sure it should be dropped from the description.

Oh, I wouldn't advocate dropping "sudden onset" as an indicator, for sure. I'm just sensitive to it being a criteria, as this very early, Swedo-born "requirement" has, in our experience, ruled out too many of our kids, especially when granted strict, literal interpretation by a medical community still in its infancy with regard to the disorder. <_<

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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)

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For us, the crescendo was a sudden onset, went to school fine on Feb 1 '08, but by 10am, school called that DS (now14) would not quit spitting, it was the first tic we had ever seen. Also has a dx of autism. He had a horrible strep infection we were having a hard time getting rid of, starting on Dec '07. I have never heard anyone having this particular tic, and not to the level that we had...or at least, I hope. Believe me, it will definitely seperate you! But in hindsight, that is when things began to unravel...it gave us some answers to the constant weird regressions over the years...mainly OCD but the strange movement disorder thing. So not sure how to answer the poll....sudden onset, yes....but maybe not, it may have been excerbations for years too.

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This was a bit tough to answer.

 

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.

 

However, in going back over all our notes, we discovered that when she was 5, she exhibited what could be seen as OCD traits coincident with being treated for an upper respiratory infection. We think this was her real first PANDAS episode.

 

At that time, she exhibited excessive hand washing and worry about getting sick. A friend's child had died of a rare cancer and she was worried she too could get sick. We actually thought this a normal childhood fear that could be addressed with reassurance. She also exhibited the symptom of needing to walk 15 feet behind an older neighbor (who was ill at the time). Again, she was worried about contamination. It took about a month but she recovered. Curiously, that was one of the few times she (and her sister) had gotten antibiotics to cure an upper respiratory infection.

 

Regards,

 

Buster

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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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My dd mirrors busters child, at 7 severe change stopped eating, hiding under bed, pediatrician thought she had a psychosis, hospitalized ended with rash and high fever while still in hospital.(Never had any movement disorder) Got better slowly over time. Two years later overnight tics, ocd, catatonic state, dilated pupils close to 4 months then some remission on abx. At 12 severe movement disorder overnight, Actually my dd walked in the room and said Mommy its back. Hands rolling, eyes rolling, hyperactive. Now though she displays more consistent less severe symptoms all the time as long as she is not sick. With illness she has more severe tics again. No ocd anymore cuz of ivig.

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I chose "overnight exacerbation." We had 3 of these where it was like someone flipped a switch inside his head. Didn't choose 1st option because our son's symptoms started with polyarthritis, muscle weakness, difficulty walking (classic rheumatic fever). Six weeks later, he started have seizure-like episodes where all limbs jerked and twitched uncontrollably (standard latency between ARF onset and Sydenham's chorea onset).

 

Consequently, he was originally diagnosed with ARF / SC, which evolved following a very high fever. The "classic" PANDAS symptom explosions happened overnight or in a matter of hours later on.

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Our daughter started cleaning one day in first grade and we thought it was a phase. This gradually waned over several months. However, she had just had strep when the cleaning began. A year ago in January, she went to bed a "normal" child with strep and just starting an antibiotic and literally woke the next morning a changed child. Therefore, I chose sudden as the symptoms literally occurred overnight for her.

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