Swedo on Le Roy- TIME Healthland mag

[JMTho]

http://healthland.time.com/2012/02/08/new-diagnosis-in-teen-tic-disorder-what-is-pandas/

[bigmighty]

This is interesting. Dr. Swedo says in this interview that she is unaware of PANDAS ever happening on clusters. On the DC area NBC news last night, Dr. Latimer was quoted as having said there was a big cluster outbreak of PANDAS in Richmond right now.....

[SSS]

I read the article, and the whole thing just underscores the insanity and plight we've all been through.

At least this illness is 'getting out there' so hopefully, a parent with a newly afflicted child may say to themselves:

Hmm, this looks like that PANDAS thing I read/heard about.

Pray tell they do not run to their pediatrian to be told:

'It's just stress.'

I feel so frustrated following this story. This illness is REAL and it is he!!.

[oivay]

It totally mirrors everything we went through, right down to the conversion disorder diagnosis by the neuro at a well funded relatively local children's hospital.

 

Our only difference was that we had oodles of lab work documenting strep conducted by the pediatrician, who knew that strep caused ticks and was the first one to order zithro. She was a doubting Thomas with respect to Pandas until the Cunningham test results came back, and actually said she'd never seen a kid with so much strep. And we even had preceding documented other test results, reports from the cardiologist, gastroenterologist, scores of bloodwork, etc.

 

It is enough to drive anyone over the edge. And these "experts" bickering with each other constantly.....we also had that. It was amazing to see what some of the doctors would say to us privately that they wouldn't say to the pandas naysayers.

[peglem]

Well it seems to me if you can have community outbreaks of rheumatic fever, community outbreaks of PANDAS are a real possibility, since both are strep triggered autoimmune problems.

[PowPow]

Maybe dr latimer was referring to a group she sees from that area? Not an official cluster, but a seemingly large amount from one general area, in her perception.

I agree that these bickering really do not show alot of professionalism. Do your part, say your peace, offer your proposed treatment plan and let it alone.

[PANDAS_Denmark]

Well it seems to me if you can have community outbreaks of rheumatic fever, community outbreaks of PANDAS are a real possibility, since both are strep triggered autoimmune problems.

 

In THIS article Swedo is - quite interesting - quoted for saying : "If this many girls had gotten PANDAS in the school, then that meant there was a very virulent form of strep in the school"; that is : PANDASclusters are a possibility given the right (or wrong !) circumstances -

Edited February 9, 2012 by PANDAS_Denmark

[bulldog24]

I am still having a hard time with the "out break" being PANDAS. I just cant wrap my head around it. a piece of the puzzle is missing for me. Think about your child school for a minute. What are the chances there are 12 other PANDAS kids in the school? I mean 12? /The only way it makes sense to me is that it would be largely to blame on a very nasty strep strain or other nasty germ. It doesnt make sense to me based on the info I have seen. I certainly dont know all the history and presentations, but 12 PANDAS kids doesnt make sense, especially since boys seem to get it more than girls,

 

just my opinion

[nicklemama]

Twelve seems like a lot but if you use the formula of 1-2% of the pediatric population has PANDAS, then you'd expect to find 12- 24 kids in a school of 1200. Around here, the high schools are huge, so that might be expected.

 

Its weird to think of a PANDAS outbreak but, like Swedo said, maybe its a very virulent strain of strep.

[peglem]

Y'know, I used to be a school teacher. In hindsight I can see a few years of teaching where there were at least 2 PANDAS kids out of the 25 or so kids in my classroom. I think it is under-reported because it is under-diagnosed. Just my opinion. The kids usually end up w/ psych dx's.

[EAMom]

I am still having a hard time with the "out break" being PANDAS. I just cant wrap my head around it. a piece of the puzzle is missing for me. Think about your child school for a minute. What are the chances there are 12 other PANDAS kids in the school? I mean 12? /The only way it makes sense to me is that it would be largely to blame on a very nasty strep strain or other nasty germ. It doesnt make sense to me based on the info I have seen. I certainly dont know all the history and presentations, but 12 PANDAS kids doesnt make sense, especially since boys seem to get it more than girls,

 

just my opinion

 

Of course it would take the a nasty strain of strep.

 

Think of ARF outbreaks, in this outbreak 15 soldiers were diagnosed. http://www.cdc.gov/mmwr/preview/mmwrhtml/00001088.htm

 

"A retrospective records review revealed that from February 1987 through February 1988, 10 soldiers assigned to Fort Leonard Wood were hospitalized with ARF*; four additional patients developed signs and symptoms of ARF within 5 weeks of transfer to other army posts. "

 

and

 

Studies in the 1950s during an epidemic on a military base demonstrated 3% incidence of rheumatic fever in adults with streptococcal pharyngitis not treated with antibiotics. http://emedicine.medscape.com/article/1007946-overview

 

so 3%...not sure how many kids are in the school? If there were 500 kids total in Le Roy Jr/Sr. high school then 3% of the population would be 15 kids, right?

 

Here is some interesting info on strains (article is older-2002)http://www.genomenewsnetwork.org/articles/03_02/rheumatic_bacterium.php

In a companion paper to be published in the coming months, Musser’s group will report the results of a large-scale targeted gene sequencing on more than 900 strains collected in Salt Lake City from 1984 to the present. They found that during peaks of rheumatic fever outbreaks the M18 strains were dominant.

 

“The M18 strains more or less took over during the peaks,” says Musser, noting that in between the outbreaks, the M18 organism was present in the population but in low numbers relative to all other strains. “It was hanging out, if you will, until it reached a critical mass.” One explanation is that the bacteria can survive in persons for long periods of time without causing symptoms.

[Iowadawn]

My two cents on What Swedo is saying. Overall, I think you wants to be VERY careful about what she puts out there to the general public so it doesn't jeopardize any ongoing research she is doing. WHat she is saying is lining up to a T with what is on the books--right now. Say the wrong thing and she'll find yourself backpedaling. I think she is being very very careful so not to mess up the work they are doing. Kind of like her recently stating that they knew back in the late 90's that it wasn't just strep, but they kept this quiet in hopes that the disorder would catch on. I would guess that they are keeping some information tight to the vest until the right time. All MHO. Dawn

[Iowadawn]

My two cents on What Swedo is saying. Overall, I think you wants to be VERY careful about what she puts out there to the general public so it doesn't jeopardize any ongoing research she is doing. WHat she is saying is lining up to a T with what is on the books--right now. Say the wrong thing and she'll find yourself backpedaling. I think she is being very very careful so not to mess up the work they are doing. Kind of like her recently stating that they knew back in the late 90's that it wasn't just strep, but they kept this quiet in hopes that the disorder would catch on. I would guess that they are keeping some information tight to the vest until the right time. All MHO. Dawn

[oivay]

In our case, my daughter was diagnosed with Pandas and Sydenham's. Kid next door was diagnosed with Tourette's. Kid directly across the street was also diagnosed with Tourette's. I thought the odds of this were statistically impossible.

I asked my our neuro about this ( of the 3, he only treated my daughter), and asked if he thought this was basically statistically impossible. He said "Not at all. What you probably have is a highly virulent strain of strep going around."

 

?????

 

Additionally, right before we went for plasmapheresis, neuro there told me, and I was also told by others, that there were often "clusters" of kids with Pandas=like symptoms, and that they usually showed improvement with abx and steroids, until they didn't, and then it was time for PEX.

This particular batch was around the NY/PA border.

[EAMom]

 

 

so 3%...not sure how many kids are in the school? If there were 500 kids total in Le Roy Jr/Sr. high school then 3% of the population would be 15 kids, right?

 

 

To answer my own question, according to this website, there are 616 students in the Jr/Sr High School. It covers grades 7-12.

http://public-schools.findthebest.com/

So, to have 15-20 students affected would be right in line with the 3% number.

Edited February 10, 2012 by EAMom