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Age 11 seems to be a magic PANDAS #


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Is it me or does it seem that an extraordinarily high number of cases present at age 11???

Just seems like when I hear of a new case i assume they must be 11.

 

what are others experience?

My daughter was 6 years old when she had her first recognizable episode.

 

Have you ever been to www.pandasnetwork.org ?

 

Under the "Parent's Research" tab, there is a chart called "200 PANDAS Case Summary". Of course the ages vary a lot, but I think the majority of them are a bit younger than 11 -- Also, I'm not saying that this is at all a comprehensive chart...I just thought you might like to see it.

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Hmmm

 

I don't know, but I've wondered something similar....if the kiddos who have early onset (6/7 and younger) of "infectious-based/auto-immune mental illness" have a higher incidence of symptoms subsiding, diminishing or vanishing at puberty than the group of kiddos that have undetectable or barely brewing symptoms until pre-puberty (10-11ish) and then the Wham Bam onset of FUBAR?

 

I know, too many variables to speculate.

 

What is puberty's role?

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Hmmm

 

I don't know, but I've wondered something similar....if the kiddos who have early onset (6/7 and younger) of "infectious-based/auto-immune mental illness" have a higher incidence of symptoms subsiding, diminishing or vanishing at puberty than the group of kiddos that have undetectable or barely brewing symptoms until pre-puberty (10-11ish) and then the Wham Bam onset of FUBAR?

 

I know, too many variables to speculate.

 

What is puberty's role?

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even though my last non-panda went panda at age 8...

strep(he hadn't had strep in at least 5 years, if at all, even with all the strep that has run through our house)

, 5weeks later another illness..and then 5-7 days later..the hammer fell

 

i think the age where it goes hyperbolic is 9,10,11,12...those would be the puberty ages...

the ds i mostly write about..had pandas since 3...but this unrelenting onset of almost 2 years was about a month after turning 9...

 

so back to ds8...i am hoping to still clear him...and put him in a bubble once i do so....

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We had our first MAJOR exacerbation at 12. I'm almost positive puberty and the kicking in of hormones is what proved to be the "last straw" with our DS; after all, hormones tend to cause inflammation.

 

That being said, I would guess that PANDAS actually begins considerably younger . . . we just didn't know what it was or what the relationship was between infection and our DS's sensitivities, OCD, separation anxiety and emotional lability. We knew he had several of those characteristics at a MUCH younger age, but being asymptomatic and essentially "hyper-immune" to most common childhood illnesses (and to think I was patting myself on the back for a while -- "My kid is NEVER sick! Must be all that dedicated breast-feeding I did when he was an infant!" :wacko: ), it took us until years later to sort it all out!

Edited by MomWithOCDSon
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I would agree 9 to 11 has been our experience.

 

In our case older d had her WORST OCD PANDAS exacerbation at 10 and a half (though she had an episode 6 months earlier.)

 

Our second d is in the midst of her worst OCD/raging/ticcing episode at just-turned-11, (though she had a lesser episode earlier.)

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I was diagnosed with PANDAS at age 10. I never had any tics or OCD before. Everything began age age 10.

 

I would agree 9 to 11 has been our experience.

 

In our case older d had her WORST OCD PANDAS exacerbation at 10 and a half (though she had an episode 6 months earlier.)

 

Our second d is in the midst of her worst OCD/raging/ticcing episode at just-turned-11, (though she had a lesser episode earlier.)

Edited by fr88
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My daughters both started at 10 & 1/2. I never realized that until right now. (somethings have to knock me on the head with a brick)

I am watching my almost 6 year old, though, who has started with tics and a few emotional changes.

 

hmmm...

 

if it started earlier it was very low level issues that I did not notice too much. I probably tried to ignore any issues I noticed. which by the way- ignoring issues- is NOT a good idea:)

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DS had first recognizable exacerbation at 9. (almost 10). BUT in retrospect, I would say that he had periods ("he's going through a phase") that he "grew out of" that were abnormal before that. Indeed, if he didn't start ticcing, I am fairly sure I never would never have even found out about pandas, as his OCD was not traditional, and even dx'ing that would have probably been lumped into "sensory integration disorder"

 

He has had extreme fear of dogs for no reason, REALLY extreme fear of water - and with that bridges, planes, boats (but not swimming), bedwetting, ADHD -type behavior that would (he would usually get glowing comments from teachers until around Jan/Feb in school, and my the march teacher parent conference he's be a different kid). Other "minor" and very common stuff. That "subclinical" stuff went on for around 3 years - but wasn't there the whole time. for example, he was petrified of flying or driving over water for about 9mos. then it just stopped.

 

So, I think he had this since he was around 6. His symptoms just weren't severe enough, and his behaviors fell into the "quirky kid/going through a phase" category. Personnally, I think our kids production of the wrong antibodies builds up over time, and the more of it they get, the worse the symptoms get. If you listen to Swedo talk, she mentions that she thinks that we aren't catching the first exacerbation - (and/or making the relationship to strep) because the first episode will happen up to 9 months after the exposure. Then, they get closer and closer together, until you can see the behavior before the culture is positive.(listne to her talk posted on first page of http://pandasnetwork.org

 

 

This why I hate the "sudden severe onset " in the definition. I don't think it needs to be over night. I think it BECOMES over night over time, as the immune system "learns" to produce the wrong antibodies. It gets positive reinforcement, because the antibodies and finding something to attack (their own neuronal tissue) and it learns to send out more ,and do it more quickly - just like it would if it was developing normal immunity to an antigen. With this being in the definition, a kid that has had some symptoms that have been going on for a while (perhaps didn't remit fort he last exacerbation) will be misdiagnosed. And, if you listen to that speech (or maybe this was in one of her papers somewhere..can't remember) she says that the first or second time the child is exposed to the antigen, a few weeks later they will have some form of OCD and then a few weeks after that other symptoms will present...How is this "overnight!?

 

 

PS - I'm pretty sure that pandas median age much younger in pandas than tourettes or OCD (non-pandas versions) pandas is younger - 7years (yrs) the others are older 10/11) - BUT personally I don't think you can put much wight into this because who knows how many ts and ocd cases have been mis- dx'd and are messing up the stats.

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PS - I'm pretty sure that pandas median age much younger in pandas than tourettes or OCD (non-pandas versions) pandas is younger - 7years (yrs) the others are older 10/11) - BUT personally I don't think you can put much wight into this because who knows how many ts and ocd cases have been mis- dx'd and are messing up the stats.

 

this is just a discussion and in some ways i agree with some things

..and you guys know how i feel about"ts"(not)....it just doesnt' catch the parents eye till then..till it goes hyperbolic....or...it might really be their first onset..as with ds8...though trying to think back...i do remember an eye blink for 2 weeks that again i was told was a transient tic...he may have had strep then?...but he has not had strep again till 5years later, 6 weeks prior to this onset..(second illness..i believe it's related to his pos mono test a couple weeks ago double slammed him..he was not ticcing with the strep and thought he remained non-panda)

 

anywho, like i said..ds10 1/2..has had pandas since he was 3...the first 2 times...he was sick, w/i 2 weeks the tics came ..then abx then remission...by the 3rd time ..the tics started coming prior to realizing he was even sick...still ran around like a madman....test pos to strep..do abx...remission...ages 3,4,5,6,7,8(diaganosed with transient tic by docs and neuro..as they rolled their eyes at me and pandas)

this onset ...at 9years..is hyperbolic...has not gone into remission(completely)but so close with steroids a couple times and doing equally well now(knock, knock,double, double, jinx, jinx)....the same years "ts" has usaual onset...

 

and we over the last 2 years are really just starting to realize how intricate, complex and the many possible variables that really exist in getting these kids well..(not just strep anymore!!!!)immune complexes, gut issues etc

 

oh..ps...they don't run a single lab, mri, ekg, stool sample, unrine test, vitamin defcenty, aso, myco p. mono, celiac etc. test...nothing to diagnose TS....nothing, none..not interested

Edited by Fixit
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DD11 (now) became severe in Jan 2009, when she was 9 years old.

 

She improved for several months following T/A in August 2009... until she caught strep again spring 2010 (aka: the strep that won't go away & it led us to discover her immune deficiency in early October 2010) - just before she turned 11.

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