Kurlan Webinar

[Fixit]

I hope what i am saying adequately affirms what you are saying in your last 2 super awesome posts

this is part of what i posted on the TS board

And i bet you BUster already said this but with big words...

 

PS ...Ds also started thyroid med for high TSH today

 

 

My husband who has a blink and a head shake gets used to get strep by looking at him.

he had it many times during my sons younger years and maybe before and during but i don't remember....the weird thing is as when my husband stopped getting strep so did my son..i'm gonna say 2 years with no pos strep for either...i will have to check with hubby.((( in the last 2 years, if ds did tic i took him to doc ...no strep...but since he was so subseptible the docs would give anti's anyway since he got it so many times, just in case we were catching it too early as he always presents with lumpy glands, and or including...sinus, throat irritation, chest something etc...his body is fighting something at the time of the visit...that they would attest too)))) so maybe the anti's were htting the Myco and i didn't know it but i thought if it's not strep those biotics are getting some other bacteria in his system...I new it was catching something

 

when my hubby would have strep i can't say his tics were worse.. Because they can no longer (I don't think) cross the barrier( i know enough just to be annoying ).but when he was on anitbiotics, and i've said this to him a couple of times...."your tics seem MUCH better" and i noticed that a couple of times.....of course i've been poo pooed off saying .."no such thing as adult with tics having something aleviate it unless it''s over the course of age"..Now i'm having hubby checked for thyroid, lupus and Myco P since we are checking things

 

So this makes me go back to thinking that that those common genes that they might be finding mean the lack of the ability to stave off bacteria

AS now ds doesnt' seem to get strep but is getting something...that something is Myco P...and in one of the links i think i posted...it says most people don't need anitbiotics for myco P and can fight it naturally...again if i worded that right!

 

Now as we get older our brain barrier is supposed to close....So if you get strep or Myco P that barrier is already closed and cant attack the brain

Is that why TS is usually before the age of 18 prior to the barrier closing.

And you get more strep as a kid so you might see it then(like my son)....now that ds is older his barrier is closing, he's not catching strep and...maybe it wouldn't matter now if he did because the strep bacteria is so big it can't get in..(the strainer grid size is getting smaller, refering to the brain barrier)..but the Myco P is so small it can still get in,,its the smallest genome http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae

http://en.wikipedia.org/wiki/Mycoplasma_pneumoniae

 

And that's why you rarelly see adult TS onset Because the barrier is closed even if you were suseptible

 

I hope i haven't repeated this as a theory someone else came up with and that i got it out understandably this is a repeat

 

What i;m saying is TS is way my kid may express an infection but your is ocd , or both or something else.....But i think that is what you said..i'm always a day late and a dollar short!!!!

[Fixit]

And this i wanted to add this too;

 

Like the MS link someone , posted were people with MS have more iron in the brain....the question was why..do they normally just have more iron than others.....well the answer seems to be they can't shed the iron

,,,but i want the people who are supposed to be researching this to look at it from all angles...not just the 12 o'lclock postion but the 3:45 angle and then look at it form the back.and then get on top...OUTSIDE THE BOX

maybe the common thread is lack of ablitiy to fight infection and then they are safe once the barrie closes

 

You can fight strep and someone else can fight Myco P but for these kids it gets stuck

 

Sorry i'm just an angry mom these days

[Dr_Rosario_Trifiletti]

As I listened to the webinar, I tried to take some notes. If his objections can be overcome, then we will have moved a mountain.

So here are some of the things I heard him say:

 

1. Criteria: His major issue, to me, was he hates the Swedo criteria, especially the main 5.

2. Criteria: Secondary symptoms are too common in the pediatric community and could make anyone "eligible" for a PANDAS diagnosis

3. Sawtooth vs. Waxing and waning

4. 1 Strep titer test cannot be used as clinical evidence

5. Columbia study not replicated/validated

 

My editorial comments:

On Point 1 - he spent a lot of time proving "PANDAS kids" (doubt he would know one if he tripped over one) don't get strep at the start of an exacerbation any more than TS kids. I would first argue that you have to look for strep in more than just the tonsils. But I could agree that after the initial episode, he might be right. My son is a "canary" Since he's been on prophylactic antibiotics, he hasn't gotten a strep infection. But he had one mild and one major exacerbation when he was exposed to someone with an infection. So maybe the Swedo criteria needs to be clarified- suggestions?

 

Point 2 - My personal experience is that it's the overwhelming combination of both the primary and secondary symptoms that make PANDAS so different than TS, traditional OCD or ADHD. Maybe you need to have 5 out of 12 co-morbid symptoms, or a YBOCS type of rating system where traditional TS or OCD kids might score high in 2-3 sections of the scale, ADHD kids might score in 1-2 sections, but a PANDAS kid would likely score high in 7 sections of the scale.. I know plenty of parents who thought "oh it's traditional OCD" until they suddenly read about urinary urges or piano playing fingers. Dr L has said "OCD kids don't usually get urinary urges". It's the fact that you often get many if not all of these symptoms, overnight, that make this disease different.

 

Point 3 - someone just needs to get a (sightly padded) baseball bat and knock sense into him. Intelligent people should be able to understand the difference between going 0 to 60 back to 0 in PANDAS versus 10 to 30 to 20 in TS. Or maybe I don't understand waning. But I think a definition or quantification of each phrase is needed.

He also feels (I think wrongly) that a carrier state is not dangerous or qualify as an infection that should be treated. Maybe in the general population. But there must be something autoimmune that is different in PANDAS kids

 

Point 4 - I actually agree with him. I think diagnosing PANDAS on one titer result is bad - bad if a doc uses just one test to dismiss PANDAS, bad if a doc uses one result to diagnose it. I think titers - a series of them - should be considered as "substantiating" evidence, but not a big piece of the puzzle.

 

Point 5 - anyone know of any study disproving the Columbia study?

 

Other things

Kurlan, along with many many docs, thinks a carrier state is harmless and doesn't need to be treated with antibiotics. It became clear to me at this point in the webinar that he is using "normal" people as his guide for all of this. Our kids aren't "normal" If they were, they'd get strep like everyone else and move on, with or without antibiotics to shorten their misery. So somehow, really smart immunologists have to figure out why being a carrier or being near a carrier sets our kids off. (Yes, I know CaM Kinase but we need a way to shift the mentality of the general pediatrician - they too keep expecting our kids to react "normally" to a 10 day script. CaM Kinase needs to be explained in "Doctors for Dummies" and taught in med school so they stop dismissing us when we say our kids aren't "normal". No one expected a girl to die from kissing a boyfriend who ate peanuts. Somehow, docs need to understand that simple "exposure" to strep or other bacteria is our "peanut". What makes our kids become canaries?

 

I objected to a lot of things in his presentation - not wanting to test a TS kid for strep, not treating for anything but active, confirmed strep throat, the fact that his "Pandas" kids weren't given antibiotics, so maybe they never had the chance to remit, on and on. But I heard two things I didn't expect to hear - I heard "IF Pandas exists" which I think is a new word in his vocabulary and maybe he's starting to hedge a little in case he's on the wrong side of history...and I heard him open to being able to "see" PANDAS - that if an MRI or some other imaging device could "show him" how a PANDAS basal ganglia was different from a TS kid, then he might be more open to it. I read a few months ago about a new imaging technology that was letting docs see nerve inflammation that doesn't show on an MRI - anyone know what I'm talking about?

 

So if we were to collectively write a retort to his presentation, using science and suggesting things we'd like to see explored, what would you say? (obviously my bat comment wouldn't make the final cut).

 

 

Galileo said, on recanting, when the Catholic Church threatened to excommunicate him for his discoveries of four moons moving around the planet Jupiter, which clearly debunked the Church's position of an earth-centered universe

"Eppur, si muove" (and yet, it moves)

 

And Gamaliel:

And now I say unto you, refrain from these men, and let them alone, for if this counsel or this work be of men, it will come to nought: but if it be of God, ye cannot overthrow it, lest haply ye be found even to fight against God. (Acts 5:34)

 

in other words, ignore the naysayers, eventually the truth will out ...

 

Dr. T

[jewels]

Fixit,

 

Vent, moan and rant all you like, everyone knows it comes from the heart after watching your child suffer with not many wanting to help. We listen, and you've raised some good points. Our children need help, and all funds should be available to study all the findings that the parents of these children have raised.

 

If Drs don't look past their medical books then nothing's found. There are the cherished few Drs, but many others that make their living on the top of not finding the reason but medicating the symptoms.

[Fixit]

Galileo said, on recanting, when the Catholic Church threatened to excommunicate him for his discoveries of four moons moving around the planet Jupiter, which clearly debunked the Church's position of an earth-centered universe

"Eppur, si muove" (and yet, it moves)

 

And Gamaliel:

And now I say unto you, refrain from these men, and let them alone, for if this counsel or this work be of men, it will come to nought: but if it be of God, ye cannot overthrow it, lest haply ye be found even to fight against God. (Acts 5:34)

 

in other words, ignore the naysayers, eventually the truth will out ...

 

Dr. T

 

 

And this is from a member here,how she signs off on her posts i think its Tara something

 

"All truth goes through three stages.

First it is ridiculed.

Then it is violently opposed.

Finally, it is accepted as self-evident." -Schoepenhouer

 

Not trying to steel your thunder DR T

 

And thanks jewels

[nevergiveup]

I guess we could look at this as a good thing. As more info comes in, the more aggressive they must oppose. So we are now one step closer to acceptance. Thanks I think you all are right Maybe this is the beginning of the end of this controversy.

 

 

Fixit,

 

Vent, moan and rant all you like, everyone knows it comes from the heart after watching your child suffer with not many wanting to help. We listen, and you've raised some good points. Our children need help, and all funds should be available to study all the findings that the parents of these children have raised.

 

If Drs don't look past their medical books then nothing's found. There are the cherished few Drs, but many others that make their living on the top of not finding the reason but medicating the symptoms.

[reactive]

As I listened to the webinar, I tried to take some notes. If his objections can be overcome, then we will have moved a mountain.

So here are some of the things I heard him say:

 

1. Criteria: His major issue, to me, was he hates the Swedo criteria, especially the main 5.

2. Criteria: Secondary symptoms are too common in the pediatric community and could make anyone "eligible" for a PANDAS diagnosis

3. Sawtooth vs. Waxing and waning

4. 1 Strep titer test cannot be used as clinical evidence

5. Columbia study not replicated/validated

 

My editorial comments:

On Point 1 - he spent a lot of time proving "PANDAS kids" (doubt he would know one if he tripped over one) don't get strep at the start of an exacerbation any more than TS kids. I would first argue that you have to look for strep in more than just the tonsils. But I could agree that after the initial episode, he might be right. My son is a "canary" Since he's been on prophylactic antibiotics, he hasn't gotten a strep infection. But he had one mild and one major exacerbation when he was exposed to someone with an infection. So maybe the Swedo criteria needs to be clarified- suggestions?

 

Point 2 - My personal experience is that it's the overwhelming combination of both the primary and secondary symptoms that make PANDAS so different than TS, traditional OCD or ADHD. Maybe you need to have 5 out of 12 co-morbid symptoms, or a YBOCS type of rating system where traditional TS or OCD kids might score high in 2-3 sections of the scale, ADHD kids might score in 1-2 sections, but a PANDAS kid would likely score high in 7 sections of the scale.. I know plenty of parents who thought "oh it's traditional OCD" until they suddenly read about urinary urges or piano playing fingers. Dr L has said "OCD kids don't usually get urinary urges". It's the fact that you often get many if not all of these symptoms, overnight, that make this disease different.

 

Point 3 - someone just needs to get a (sightly padded) baseball bat and knock sense into him. Intelligent people should be able to understand the difference between going 0 to 60 back to 0 in PANDAS versus 10 to 30 to 20 in TS. Or maybe I don't understand waning. But I think a definition or quantification of each phrase is needed.

He also feels (I think wrongly) that a carrier state is not dangerous or qualify as an infection that should be treated. Maybe in the general population. But there must be something autoimmune that is different in PANDAS kids

 

Point 4 - I actually agree with him. I think diagnosing PANDAS on one titer result is bad - bad if a doc uses just one test to dismiss PANDAS, bad if a doc uses one result to diagnose it. I think titers - a series of them - should be considered as "substantiating" evidence, but not a big piece of the puzzle.

 

Point 5 - anyone know of any study disproving the Columbia study?

 

Other things

Kurlan, along with many many docs, thinks a carrier state is harmless and doesn't need to be treated with antibiotics. It became clear to me at this point in the webinar that he is using "normal" people as his guide for all of this. Our kids aren't "normal" If they were, they'd get strep like everyone else and move on, with or without antibiotics to shorten their misery. So somehow, really smart immunologists have to figure out why being a carrier or being near a carrier sets our kids off. (Yes, I know CaM Kinase but we need a way to shift the mentality of the general pediatrician - they too keep expecting our kids to react "normally" to a 10 day script. CaM Kinase needs to be explained in "Doctors for Dummies" and taught in med school so they stop dismissing us when we say our kids aren't "normal". No one expected a girl to die from kissing a boyfriend who ate peanuts. Somehow, docs need to understand that simple "exposure" to strep or other bacteria is our "peanut". What makes our kids become canaries?

 

I objected to a lot of things in his presentation - not wanting to test a TS kid for strep, not treating for anything but active, confirmed strep throat, the fact that his "Pandas" kids weren't given antibiotics, so maybe they never had the chance to remit, on and on. But I heard two things I didn't expect to hear - I heard "IF Pandas exists" which I think is a new word in his vocabulary and maybe he's starting to hedge a little in case he's on the wrong side of history...and I heard him open to being able to "see" PANDAS - that if an MRI or some other imaging device could "show him" how a PANDAS basal ganglia was different from a TS kid, then he might be more open to it. I read a few months ago about a new imaging technology that was letting docs see nerve inflammation that doesn't show on an MRI - anyone know what I'm talking about?

 

So if we were to collectively write a retort to his presentation, using science and suggesting things we'd like to see explored, what would you say? (obviously my bat comment wouldn't make the final cut).

I wonder if this study of his is the same one Buster told us about on an earlier post? If it is, Buster noted quite a few problems with Kurlan's study. It sounded like old news to me as I listened last night (yawn) but I could be wrong. It is not clear to me that any of his so called PANDAS kids had the severe, debilitating abrupt onset thing...

[sf_mom]

Thankfully, we have the power of the internet. We will get our children better, we will document what we did....... the facts can not be denied. The tide will change. The Dr.'s currently treating deserve the NOBEL.

 

-Wendy

[Buster]

I can't believe I missed this post much less the webinar. Feb/March was such a busy time.

 

The notes are really helpful. I wish I had heard exactly what he said -- does anyone know if the "webinar" is available online?

 

Let's start with Kurlan's selection process:

 

Kurlan selects his subjects from children diagnosed with Tourettes Syndrome and typically selected from the Tourettes study group. The diagnostic criteria for 307.23 requires:

1. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.)
   
2. The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.
   
3. The onset is before age 18 years.
   
4. The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington's disease or postviral encephalitis).
   

So technically, if PANDAS is a disease, then a child with PANDAS couldn't have Tourettes Syndrome because of the exclusionary comment in the last bullet.

 

In Kurlan's reports, 90% of the children were diagnosed with Tourettes. Presuming this was an accurate diagnosis, this means these children had no remission in at least one year and no tic-free period of more than 3 months. Comments in the study and the delay from initial recruitment to execution indicate that the children had been diagnosed with Tourettes for > 3 years with no remission with many post-pubescent at the time of the study.

 

This means Kurlan was not looking at kids at the onset, but only after many years of unremitting tics.

 

Also looking at his recent 2008 study, none of the children had any variation in OCD symptoms over a 2 year run. This means these children are quite different from Swedo's kids. Swedo was observing children with +/- 17 points in CYBOCS scores around an exacerbation. Kurlan noted variances of 1.6 (i.e., nothing) over a 2 year window.

 

In addition, in Kurlan's 2008 report, he broke the blind to inform pediatricians if the child was diagnosed with GABHS. While technically his team didn't know that a child had been treated, the child/mother/... sure did. If anything, his study confirmed earlier studies which are that prompt treatment of GABHS with antibiotics prevent sequelea (including PANDAS).[/b]

 

Anyway, I'd love to hear what he says directly and it annoys me to no end that the peer group reviewing the 2008 papers didn't pick on these results and the conclusions given the holes in the study.

 

By the way, in case it isn't obvious, Leckman's kids were in the same study. Singer's kids were pulled from the same study. Schulman's ridiculous write up was claiming these were three independent studies (when they were all the same kids). Arggh.

 

Buster

Edited March 20, 2010 by Buster

[thereishope]

If you go to this website, you can download the webinar...

 

http://njcts.org/wordpress/webinars/can-st...is-pandas-real/

[T_Mom]

Weary--just plain weary. Reading Buster's excellent comments above, reading EVERYONE's comments along the way--

wondering why we have all some how landed here and have had to deal with this horrid, horrid illness that rocks our families, our lives -- etc. At the same time I am so thankful for the shared communication and information here.

 

WHAT is at stake is too big for us all not to do every darn thing we can to make it known what our children have gone through--

sorry--just my knee-jerk reaction tonight--

 

Excellent thread.

Edited March 21, 2010 by T.Mom

[Buster]

I've now listened to Kurlan's webinar. LLM captured Kurlan's basic argument quite well. In addition to LLM's post I'll raise a few things here:

1. Kurlan stated that the breadth in symptoms (i.e., things like daytime urinary frequency) was a strike against PANDAS. This statement is without merit and without research. More importantly, he confused statements made by foundations with statements made by researchers. Finally, he did not seem to be aware that many of the symptoms were actually manifestations of compulsions and therefore a unifying symptom (and helpful comorbid indicator) rather than separate manifestations.
    
   
2. He stated that the "sawtooth course is common in TS". This statement is also without research merit. The use of the word sawtooth does not appear in TS literature prior to the comparison to PANDAS.
    
   
3. Reviewing his paper, his kids did not have a baseline change in tics or OCD (meaning no child went into remission in the 2 years). Also no child had a major OCD exacerbation during the 2 years. By definition, none of his subjects had sawtooth OCD symptoms.
    
   
4. He spent a great deal of time on his study -- however, it was very odd how he represented the research. In the presentation, he showed that they found definite and probable GABHS infections in 31 cases in the PANDAS group versus the controls that had 12. This is statistically significant.
    
   
5. In addition, if you just take the culture positive for GABHS this was 36 cases in PANDAS subgroup whereas controls had 16. This indicates that in their study 5 PANDAS kids and 3 controls did not have a rise in ASO titers and were asymptomatic despite a positive culture.
    
   
6. He did not disclose on the webinar that he informed the children's doctors when the kids had positive GABHS. As such he easily could be repeating the study that showed that treating GABHS prevents severe exacerbations.
    
   
7. He presented the hit ratio of how many kids got an exacerbation within -4 to 4 weeks from a definite or probable GABHS infection. This was statistically significant and significantly above mere chance. He dismissed this by saying that children meeting the PANDAS critieria were just more suceptible to GABHS infections and therefore hit more of the window than mere chance. The point is actually valid, but is not the simplest explanation of the data. It was just amazing that he showed the correlation and then dismissed it.
    
   
8. His final comment on the research was that most of the exacerbations recorded (i..e, 75% of them depending on definition) were not correlated with a preceeding or occuring GABHS infection. I would have loved to see this on a patient by patient basis as he just mixed individual results with a blended population. He's got 25% correlated (which is a huge amount in a study with 40 patients).
   

For me, the single biggest issue was that Kurlan did not recruit children who had exacerbations that were temporally correlated with GABHS and then compare that selected group with controls over a 2 year window. Instead, he took Tourettes kids with tics and tried to see if their tic exacerbations were correlated with GABHS. Uggh.

 

 

The second to last question in the session was "Are we any closer to understanding the causes of TS than we were 10 years ago."

 

Response: "I think from 10 years ago, we're not a heck of a lot closer. I think 10 years ago there was actually a lot of excitement about the possibility that genetic studies would in fact give us the answer. But I think the last 10 years has been pretty disappointing in that we still don't know which genes in the brain are involved and if we don't know which genes are involved [then] we don't know about the basic molecular mechanisms in the brain. There also has not been a great advance in terms of available treatments for Tourette Syndrome. Perhaps the most dramatic advance is that deep brain stimulation might be useful for patients with very severe Tourette Syndrome. But unfortunately I think the past decade has not been too kind to Tourette Syndrome and we're not too far ahead really [in] understanding things. I think there needs to be a large push in research to understand things better."

 

I thought about this comment and sort of screamed at the screen -- then stop spending money on trying to disprove PANDAS and go repeat Kirvan, Cunningham, Snider and Swedo's experiments exactly (I mean exactly) -- replicate the results and see if they are right.

 

Sigh,

 

Buster

 

 

I can't believe I missed this post much less the webinar. Feb/March was such a busy time.

 

The notes are really helpful. I wish I had heard exactly what he said -- does anyone know if the "webinar" is available online?

 

Let's start with Kurlan's selection process:

 

Kurlan selects his subjects from children diagnosed with Tourettes Syndrome and typically selected from the Tourettes study group. The diagnostic criteria for 307.23 requires:

1. Both multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently. (A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.)
   
2. The tics occur many times a day (usually in bouts) nearly every day or intermittently throughout a period of more than 1 year, and during this period there was never a tic-free period of more than 3 consecutive months.
   
3. The onset is before age 18 years.
   
4. The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntington's disease or postviral encephalitis).
   

So technically, if PANDAS is a disease, then a child with PANDAS couldn't have Tourettes Syndrome because of the exclusionary comment in the last bullet.

 

In Kurlan's reports, 90% of the children were diagnosed with Tourettes. Presuming this was an accurate diagnosis, this means these children had no remission in at least one year and no tic-free period of more than 3 months. Comments in the study and the delay from initial recruitment to execution indicate that the children had been diagnosed with Tourettes for > 3 years with no remission with many post-pubescent at the time of the study.

 

This means Kurlan was not looking at kids at the onset, but only after many years of unremitting tics.

 

Also looking at his recent 2008 study, none of the children had any variation in OCD symptoms over a 2 year run. This means these children are quite different from Swedo's kids. Swedo was observing children with +/- 17 points in CYBOCS scores around an exacerbation. Kurlan noted variances of 1.6 (i.e., nothing) over a 2 year window.

 

In addition, in Kurlan's 2008 report, he broke the blind to inform pediatricians if the child was diagnosed with GABHS. While technically his team didn't know that a child had been treated, the child/mother/... sure did. If anything, his study confirmed earlier studies which are that prompt treatment of GABHS with antibiotics prevent sequelea (including PANDAS).[/b]

 

Anyway, I'd love to hear what he says directly and it annoys me to no end that the peer group reviewing the 2008 papers didn't pick on these results and the conclusions given the holes in the study.

 

By the way, in case it isn't obvious, Leckman's kids were in the same study. Singer's kids were pulled from the same study. Schulman's ridiculous write up was claiming these were three independent studies (when they were all the same kids). Arggh.

 

Buster