Kurlan Webinar

[LNN]

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).

[peglem]

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

My understanding is that these were the criteria that Swedo used to identify kids that were eligible for her studies, and later kind of turned into dx criteria. She needed to define what made the kids she studied different from your garden variety OCD, and the OCD seemed to be her primary focus, not tics. I don't know as much about tourette syndrome as Kurlan, no doubt, but does he not see a difference between kids who go explosively ballistic w/ tics and OCD very quickly as different from those who wax and wane? Wax and wane suggest gradual and slow to me.

 

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

They are common, but there's a matter of quantity and quality in PANDAS kids that makes these different. It is unusual for a child to suddenly have the urge to void (for instance) so many times a day- and the quality of it being so often linked to anxiety/fears and overwhelming compulsion- not so common. The severity of these secondary symptoms also sets PANDAS kids apart- There's separation anxiety= "I miss my mom and wish she was here", compared to: "if I can see my mom I will die."

 

3. Sawtooth vs. Waxing and waning

I agree with you- sawtooth=sharp, abrupt increase; sharp, abrupt decrease. Wax & wane= gentle waves, slowly building to a crescendo and then easing back down.

 

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

I agree with this now...but can also see that, again, Swedo only used this in the absence of a culture-to show evidence of strep for the purposes of her study. Maybe she should only have narrowed her subjects to only those who had clearly documented strep cultures. She chose to be more inclusive instead. I wonder what she would have done differently if she could have seen 10 years into the future?

 

5. Columbia study not replicated/validated

The mouse model?

 

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.

There really have been precious few studies of carrier status- and this one sticks in my craw. I suspect carrier state is an indication that there is an immune problem. I would love to see some studies (and I think these are a glaring omission in PANDAS research) on the immune systems of PANDAS kids and strep carriers. Besides low total IgG, my daughter has very low IgG4, low IgA, and the one time IgE was checked it was not detectable (I got a copy of those labs from the immunologist and he had marked the IgE with a big ?. There is a bit of info on low IgG4 and low IgA predisposing to autoimmunity, but there is almost nothing at all on the significance of LOW IgE. Anyway, that whole carrier state needs to be visited by science. Its like a hidden variable-not checked for because there are no symptoms to indicate it should be checked.

 

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?

Does he really believe all TS has a common origin? (he did say that whole gene search didn't pan out, right?) I think he's likely to find many nonPANDAS TS kids with similar MRI's to PANDAS kids- (although I think maybe MRI is not the right tool for this) but with different causes. At any rate- maybe he's just starting to plan a way to save face for when PANDAS ultimately is a proven an accepted dx.

[jewels]

LLM,

 

Its the CRITERIA that puzzles me on this one! Does he swear by this and follow it by the book. (Seems to keep talking about them)

 

We will be 4 years into our PANDAS journey by August this year. My dd has never yet met the CRITERIA that DR Kurlan uses as a dx for TS!

 

She's had remissions of all symptoms that have lasted from 14 months, over 7 months and over 4 months, between PANDAS onsets. This is all logged on her medical records.

 

Maybe I should go and see him with dds medical history and ask him what dx he can give us.

 

 

WE DON'T MEET HIS TS CRITERIA!!!!!!!!!!!!!!

 

 

I've had my rant for the day, now I can get on with caring for my PANDAS child.

[jewels]

Another important question for him!

 

 

Every onset of symptoms my dd will regress to the age that she first started with the initial symptoms! I cannot find this "Dr noted" symptom in his criteria.

 

What would his answer to this be a wonder.

 

 

Finished ranting now.

Jules

[ajcire]

I missed the webinar... but in regards to number 2.... I have had several people say to me that when the look down the checklist for pandas it seems like it could really include all kids.... I then remind them that if they look down the checklist for autism that isolated each one of those can fit for most typical kids as well... meaning sometimes a kid just walks on their toes...sometimes a kid just has delayed speech, sometimes a kid just doesn't like certain sounds, sometimes a kid doesn't respond to their name all the time, sometimes a kid likes to watch things spin, sometimes a kid isn't good at imaginary play.... and yes isolated none of those automatically equals autism... but when you can go down the list and and check off enough to complete a puzzle.... well you might want to check it out... So with Pandas... if your child is anxious doesn't mean pandas... if your child has a little tic it doesn't mean pandas... if your child uses the bathroom a lot doesn't mean pandas... if your child has significant separation anxiety it doesn't mean it's pandas... if your child has a quirky ocd type thing it doesn't mean it's pandas.. if your child has messy handwriting/fine motor issues it doesn't mean it's pandas....if your child has strep throat it doesn't mean it's pandas BUT when you have enough pieces again to complete a puzzle.... seems like you might want to consider pandas. When doctors say that it's too broad I just think that's the same with illnesses... I mean I can take any ache and pain I have and find a million diseases that would fall under... but then I have to keep going and seeing if anything else makes sense for that too...

 

 

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

[thereishope]

I get confused on the carrier status. Just because a child does not show strep symptoms, it does not make them a carrier. My kids prove that.

 

Does anyone know if he has kids? Does he understand how the secondary symptoms do vary between a PANDAS child and a non-PANDAS child?

 

I think someone needs to remind everyone that the acronym PANDAS does not say "strep throat". It stand for strep infection.

 

I just don't understand what any naysayer's explanation is for cut and dry PANDAS kids. If he, or anyone, says PANDAS doesn't exist, I just want them to give me an explanation for what I experienced with my son.

[earnestfamily7]

Another important question for him!

 

 

Every onset of symptoms my dd will regress to the age that she first started with the initial symptoms! I cannot find this "Dr noted" symptom in his criteria.

 

What would his answer to this be a wonder.

 

 

Finished ranting now.

Jules

That is a great point! I never made that correlation... seems so obvious now - this is EXACTLY what both my son and daughter do!!!! I have a 10 year old who loves reverts to preschooler - 1st grader..... and a 1st grader that acts like a 3year old...... all when in exasperation mode. I knew that were regressing but it does seem that they are regressing to that onset age~ very interesting!

[Worried_Dad]

Great idea, Laura! Sounds like a job for... (Myth)-Buster!!!

 

(I'd pay big money to watch a "mental cage match" between Buster and Kurlan on PANDAS. No contest.)

 

 

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).

[nevergiveup]

Here's the deal, waxing or waning, severe exaserbations, SC, ocd etc.... All fall in line with TS. TS is a syndrome, not a disease. It is a grouping of symptoms and can range, from mild to severe, with remissions and sudden exaserbations. They have grouped this into one category so neuro's can treat the tic disorders with brain drugs and shrinks with shrink drugs all patches at this point.. No clear blood markers identify this syndrome. It sort of drives me crazy when I hear us separating TS from PANDAS as if TS is a disease. It is tics, tics that go into remission, tics severe or not, it has comorbids, rage or ocd, or adhd or depression and cognitive liability at times. TS is not an illness, its a grouping, no one knows the cause, no genetics have been clearly established. Eighty percent go into remission in second decade, please, Dr T reminds us that all kids seem to do fine over time with pandas, sound like ts. Its not about separating our kids out from the TS kids, our kids are the TS kids. PANDAS is a subset of TS, where an autoimmune disease is the cause, brain antibodies. Kurlan knows this. He just wants better markers so he justify treatment. Liabillity, "do no harm" these docs are the gate keepers and they also see themselves as protectors of our kids from over vigilent parents whom may risk everything to help our children. I had one arrogant neuro whom works very closely with Singer, and Kurlan, tell me that they know the syndrome is potentially three different illness. One trauma maybe at birth, two developmental, brain as child grows develops poorly, and three autoimmune disease. Clearly our kids have the autoimmune disease. They know there is an autoimmune component, they are very familiar with what mycoplasma pneun can do, severe tics. But without solid autoimmune markers , and strep titers is not it, they have no justification to treat. I do find it hard to believe that he can say the mouse model is not validated. He was one of the original docs stating that if this is autoimmune it would be reproduced in an animal. Basically, its just public policy. I think we need to push for good double blind studies, its the only solution. Abx high dose has just started with Murphy. They do the strangest studies on the ts kids, like a cap with magnets, now the mirapex drug which everyone knows over time you build up a resistence to so it may be a temporary solution at best. They failed finding the gene. Its getting pathetic. My fear is that this guy will eliminate all chance for funding. Pandas will go down the path of autism where no one is listening and all funding for studies is just targetted towards proving the parents wrong. How sad is it that a lot of the funding for autism in the past was just to prove vaccines were safe rather than trying to understand why children got sicker after vaccines. (You get different results when you are trying to dispprove something rather then trying to prove a relationship) Kind of like that stupid study in europe where they looked at kids who got strep to see if the more strep throat you got the more likely you would has ts. Please my dd's first strep throat was her first pandas attack. She didn't need to get strep throat 10 time to have an autoimmune reaction. But yet its title was good enough for pedicatricians, strep does not cause TS. Just like the studies that say vaccines are safe. We all know vaccines can cause neurological side effects. We get a paper at the pediatrician to sign telling us vaccines can cause neurogiical disease.

[peglem]

Here's the deal, waxing or waning, severe exaserbations, SC, ocd etc.... All fall in line with TS. TS is a syndrome, not a disease. It is a grouping of symptoms and can range, from mild to severe, with remissions and sudden exaserbations. They have grouped this into one category so neuro's can treat the tic disorders with brain drugs and shrinks with shrink drugs all patches at this point.. No clear blood markers identify this syndrome. It sort of drives me crazy when I hear us separating TS from PANDAS as if TS is a disease. It is tics, tics that go into remission, tics severe or not, it has comorbids, rage or ocd, or adhd or depression and cognitive liability at times. TS is not an illness, its a grouping, no one knows the cause, no genetics have been clearly established. Eighty percent go into remission in second decade, please, Dr T reminds us that all kids seem to do fine over time with pandas, sound like ts. Its not about separating our kids out from the TS kids, our kids are the TS kids. PANDAS is a subset of TS, where an autoimmune disease is the cause, brain antibodies. Kurlan knows this. He just wants better markers so he justify treatment. Liabillity, "do no harm" these docs are the gate keepers and they also see themselves as protectors of our kids from over vigilent parents whom may risk everything to help our children. I had one arrogant neuro whom works very closely with Singer, and Kurlan, tell me that they know the syndrome is potentially three different illness. One trauma maybe at birth, two developmental, brain as child grows develops poorly, and three autoimmune disease. Clearly our kids have the autoimmune disease. They know there is an autoimmune component, they are very familiar with what mycoplasma pneun can do, severe tics. But without solid autoimmune markers , and strep titers is not it, they have no justification to treat. I do find it hard to believe that he can say the mouse model is not validated. He was one of the original docs stating that if this is autoimmune it would be reproduced in an animal. Basically, its just public policy. I think we need to push for good double blind studies, its the only solution. Abx high dose has just started with Murphy. They do the strangest studies on the ts kids, like a cap with magnets, now the mirapex drug which everyone knows over time you build up a resistence to so it may be a temporary solution at best. They failed finding the gene. Its getting pathetic. My fear is that this guy will eliminate all chance for funding. Pandas will go down the path of autism where no one is listening and all funding for studies is just targetted towards proving the parents wrong. How sad is it that a lot of the funding for autism in the past was just to prove vaccines were safe rather than trying to understand why children got sicker after vaccines. (You get different results when you are trying to dispprove something rather then trying to prove a relationship) Kind of like that stupid study in europe where they looked at kids who got strep to see if the more strep throat you got the more likely you would has ts. Please my dd's first strep throat was her first pandas attack. She didn't need to get strep throat 10 time to have an autoimmune reaction. But yet its title was good enough for pedicatricians, strep does not cause TS. Just like the studies that say vaccines are safe. We all know vaccines can cause neurological side effects. We get a paper at the pediatrician to sign telling us vaccines can cause neurogiical disease.

Wow, for a kooky PANDAS parent, you sure make a lot of sense!

[jewels]

Here's the deal, waxing or waning, severe exaserbations, SC, ocd etc.... All fall in line with TS. TS is a syndrome, not a disease. It is a grouping of symptoms and can range, from mild to severe, with remissions and sudden exaserbations. They have grouped this into one category so neuro's can treat the tic disorders with brain drugs and shrinks with shrink drugs all patches at this point.. No clear blood markers identify this syndrome. It sort of drives me crazy when I hear us separating TS from PANDAS as if TS is a disease. It is tics, tics that go into remission, tics severe or not, it has comorbids, rage or ocd, or adhd or depression and cognitive liability at times. TS is not an illness, its a grouping, no one knows the cause, no genetics have been clearly established. Eighty percent go into remission in second decade, please, Dr T reminds us that all kids seem to do fine over time with pandas, sound like ts. Its not about separating our kids out from the TS kids, our kids are the TS kids. PANDAS is a subset of TS, where an autoimmune disease is the cause, brain antibodies. Kurlan knows this. He just wants better markers so he justify treatment. Liabillity, "do no harm" these docs are the gate keepers and they also see themselves as protectors of our kids from over vigilent parents whom may risk everything to help our children. I had one arrogant neuro whom works very closely with Singer, and Kurlan, tell me that they know the syndrome is potentially three different illness. One trauma maybe at birth, two developmental, brain as child grows develops poorly, and three autoimmune disease. Clearly our kids have the autoimmune disease. They know there is an autoimmune component, they are very familiar with what mycoplasma pneun can do, severe tics. But without solid autoimmune markers , and strep titers is not it, they have no justification to treat. I do find it hard to believe that he can say the mouse model is not validated. He was one of the original docs stating that if this is autoimmune it would be reproduced in an animal. Basically, its just public policy. I think we need to push for good double blind studies, its the only solution. Abx high dose has just started with Murphy. They do the strangest studies on the ts kids, like a cap with magnets, now the mirapex drug which everyone knows over time you build up a resistence to so it may be a temporary solution at best. They failed finding the gene. Its getting pathetic. My fear is that this guy will eliminate all chance for funding. Pandas will go down the path of autism where no one is listening and all funding for studies is just targetted towards proving the parents wrong. How sad is it that a lot of the funding for autism in the past was just to prove vaccines were safe rather than trying to understand why children got sicker after vaccines. (You get different results when you are trying to dispprove something rather then trying to prove a relationship) Kind of like that stupid study in europe where they looked at kids who got strep to see if the more strep throat you got the more likely you would has ts. Please my dd's first strep throat was her first pandas attack. She didn't need to get strep throat 10 time to have an autoimmune reaction. But yet its title was good enough for pedicatricians, strep does not cause TS. Just like the studies that say vaccines are safe. We all know vaccines can cause neurological side effects. We get a paper at the pediatrician to sign telling us vaccines can cause neurogiical disease.

 

What more can you say, perfectly put!

[LNN]

I do find it hard to believe that he can say the mouse model is not validated. He was one of the original docs stating that if this is autoimmune it would be reproduced in an animal. Basically, its just public policy.

 

I think we need to push for good double blind studies, its the only solution.

His blast against the Columbia study was that it wasn't double blind and supposedly when researchers didn't know which mice had been "given PANDAS" they couldn't detect the behavioral changes the Columbia researchers saw. But I'm not aware of any published research that has "failed to validate" the Columbia study - are you? He spoke as if this was a published finding, but it's only been 6 months since the original study was published - seems early to have it "disproved"

 

As for double blinds - I really struggle with the ethics of this. I don't think anyone would suggest doing a double blind on kids with RF. Just because you can't see inside the brain the way you can inside the heart, how does a double-blind become "safer" for PANDAS kids? It flies against the "do no harm" rule in my book.

 

I'd rather try to push for research that used neuro-imaging - maybe they should be dissecting the mice brains instead of observing/interpretting their behaviors

[nevergiveup]

I can say more trust me.

 

Looks likes the battles on, Pandas Foundations Launches Got Strep and Kurlan comes on to counter so Ped's don't treat with abx. Interesting, I know he got 5 million dollars in research funding for the mirapex drug to use on tics. (I'll get back with you on what he got paid personally to do the study) What does he get paid for this webinar? Why is he so vigilent against any treatment of PANDAS? Who's funding him? I think the TS society, which all these guys Singer etc... Consult and I believe are on the board and have not offered up any funding towards PANDAS studies. WHY. , let's find the money trail and I think we may understand things a little more clearly. Where is the TS foundation? Magnets on a helmet they recently funded but not another PANDAS study after swedos small study but rather very successful outcome. Please why aren't parents pushing the TS national society for more funding in this research? Oh pandas is rare, bull####, twenty percent of children have tics at some point, usually in winter months, a very large study was done on this. Cannot this be a slight immune reaction and then the kids adjust. Transient tics, hmmmmm random tics for 9 to 12 weeks after infections usually go away? Something is so very wrong! Oh yeah and let's get the shrinks out of the way, hogging up funding for useless studies, send all the neuropsychiatric disease back to neuro, immune and infectious disease and get out of the way. See I have a lot more. But its useless, I just wish I had a million dollars to donate to the right doctors, and end this controversy.

[laurenjohnsonsmom]

Maybe we can broadcast it on pay-per-view and use the money raised for Madeline's research!

 

 

 

Great idea, Laura! Sounds like a job for... (Myth)-Buster!!!

 

(I'd pay big money to watch a "mental cage match" between Buster and Kurlan on PANDAS. No contest.)

 

 

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).

[kim]

nevergiveup,

 

I want to jump up with my fist in the air (that.. YEA YOU GO nevergiveup type motion) then I had to reread your 2nd post, to see what you were actually saying