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It's UNTREATED strep that's the problem not treated strep


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A month ago, Kim posted Swedo's reply to Gilbert and Kurlan's letter about Zebras and Horses (see http://www.latitudes.org/forums/index.php?...art=#entry65250 )

 

I've been fuming since then...

 

Not about Swedo's reply, but rather why those trying to disprove the PANDAS hypothesis forget that it is untreated streptococcal infections that give rise to Sydenham Chorea and acute rheumatic fever. Experiments on treated streptococcal infection show that antibiotics are effective in preventing/minimizing severity of recurrance -- hello, that's why they do prophylaxis for patients with Acute Rheumatic Fever...

 

So a question, and I'm serious, is this really not understood? I just can't believe that folks are running 2 year longitudinal studies and failing to control for whether someone is treated or not for streptococcal infection. It still amazes me that they broke the blind and told the pediatrician whether the child had strep -- rather than having that be an independent check by the pediatrician.

 

Buster

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Caution... emotional rambling ahead... sorry

 

Buster, I am afraid this is seriously misunderstood by many who have become familiar with the Kurlan et al (2008) longitudinal study. Somehow, the Kurlan information has been modified to somehow indicate that kids with PANDAS do not exist because there was no difference in kids with and without PANDAS in his study. This is NOT what he found!!! If anyone would actually READ the article (instead of a medical evidence "byte") and be FAMILIAR with the literature, they would see that this work is NOT in contrast to what others have found and it is NOT in contrast to where we are heading with PANDAS (or maybe I am wearing rose-colored glasses).

 

 

First off - you are right... they tested the kids blood every 12 weeks and then told the primary MD if the kid had strep. They left it up to the primary MD to treat or not treat but they did not record (or at least did not report) the number of kids who received ABX (and chances are the primary MD treated to avoid ARF). Now let's think about this... perhaps they are on to something. Perhaps ALL kids should get a blood test every 3 months for strep and get treated as needed... and then we would NOT see exacerbations related to strep. wouldn't THAT be nice?

 

Second - they also did not control for neuropsych meds, and many of the kids were on them. They don't tell us exactly how many children, because we don't know if kids were on more than one medicine, but they do present a table that looks like this (sorry I cannot insert a table):

 

DRUG *Number of PANDAS ~Number of CONTROLS

{alpha}-Agonist *26 ~28

Antipsychotic *11 ~11

SSRI *18 ~26

Stimulant *13 ~12

Atomoxetine *11 ~9

Minor tranquilizer *5 ~8

Mood stabilizer -*4 ~8

Baclofen *2 ~1

Pergolide *2 ~1

 

 

Now I really do not understand the point of measuring exacerbations when so many kids in the study are on medications to reduce exacerbations. It seems to me that if they really wanted to know the difference between the PANDAS kids and controls regarding exacerbations, they would have statistically partialled out for the effects of the medications, or separated the groups out and studied the kids without meds separately. The fact that they did not leads me to question the findings.

 

HOWEVER Despite this - they still found a statistically significant greater number of GABHS infections in kids with PANDAS (um.. could it be that kids with PANDAS have an underlying immune problem?? - don't know... they never tested IGG or C3D or any other immune markers).

 

They also found that kids with PANDAS had more exacerbations than kids without - though it was not statstically significant (it was darn close, though and I bet with more kids in the study and / or with removal of the neuropsych drugs it just might be significant).

 

Finally, as the abstract states "Patients who fit published criteria for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections seem to represent a subgroup of those with chronic tic disorders and obsessive-compulsive disorder who may be vulnerable to group A β-hemolytic streptococcus infection as a precipitant of neuropsychiatric symptom exacerbations. Group A β-hemolytic streptococcus infection is not the only or even the most common antecedent event associated with exacerbations for these patients. Additional intensive studies are needed to determine whether there is clinical or scientific evidence to support separating out subgroups of tic disorder and/or obsessive-compulsive disorder patients based on specific symptom precipitants."

 

I FULLY AGREE. I take that to mean that my son, who fits the published criteria for PANDAS, is part of a subgroup of kids with tics and OCD and he is more vulnerable to GABHS infection triggering his symptoms than kids who are not in this subgroup. However, GABHS infection may not be the only infection (or even the most common infection) that triggers this in my son. I believe this is true because we have had very bad exacerbations with mycoplasma. We also had a very bad exacerbation after H1N1.

 

I agree that additional intensive studies are needed to determine whether there is clinical or scientific evidence to support this subgroup... and I'd like to add that these studies will not be helpful if they do not control for treatment.

 

I would also like to see additional intensive studies that test for a variety of infections, not just GABHS. I would like to see a study that measures exacerbations in kids who do not receive neuropsych drugs. I would like to see a study that keeps track of who gets antibiotics and states it and at least makes an attempt to control for this or partial out for this statistically. I would like to see a study that measures underlying immune function, including allergies and autoimmune markers, to get a better picture of "the whole". I would like to see the Cunningham study fully funded and used as a springboard for our kids so we can get away from this silliness of arguing if the exacerbation occured within 4 weeks or 6 weeks or 9 weeks of a GABHS infection.

 

Good golly! The PANDAS kids are sicker and they have more exacerbations. The need to be tested for strep more frequently and treated when they have it. They need to have their immune systems watched and treated as need.

 

Sorry for the rambling...

Edited by kimballot
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Buster and Kim--You need to write and publish these thoughts for the general public, somehow.

 

How, I do not know--

in what venue, I am not sure--

I just know that you both have insights and inklings of WHAT THE HECK is behind this malady and the ensuing controversy therein.

 

Please...consider...(or I threaten to put YOUR names on a Pepsi Refresh competition and raise money to PAY you to do it.

--I know we would have alot of voters ! --thanks for your insights.

 

(NPR or John Merrow Report (he does 4 a year typically on controversies...) something!

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Kim and Buster - well, you know, these guys are so brilliant they outwit themselves! The biggest issue is they did not get the kids at onset of symptoms - they were sailing on and ill for quite some time before the study occurred.

 

TO THAT END: the new IVIG study as I sort of understand it, that Swedo will get rolling soon I hope!, will look at kids ONLY at the onset of PANDAS. It will only be 30 kids so this is sad but it will be very extensive with the bloodwork -- yes, looking at all the IGG's and underlying co-infections, white blood counts, etc etc - I certainly don't know all the numbers. Dr. Cunningham's test will be used. A strep expert will TRY to figure out the serotype of strep that is causing the problem as well.

 

The naysayers can talk circles around doctors that really don't care about kids with PANDAS; they are too tired to pay attention to the many failings in the study. Dr. Kurlan has NEVER seen an acute onset of pandas.....he has no clue how these kids have suffered. He has seen mild PANDAS cases that present with tics and mild ocd.

 

To make matters more confusing, Swedo told me as I mentioned in a February memo to parents, that she didn't realize PANDAS kids react to bacteria/viruses OTHER than strep. At least Kurlan and Kaplan got that part right. Swedo is wrong to insist that PANDAS is STREP related only -- it is an AUTOIMMUNE ILLNESS -- and maybe Kaplan and Kurlan and Swedo can lay down their swords and AT LEAST agree with that.

 

Dr. Leckman wrote a paper on kids with tourettes having Dysgammglobulinenmia in early childhood. The clinical picture for kids with "dysg" is pretty bleak - likely pandas kids are like this too. Borderline quite weak immunologically. The cure for "dysg" - monthly IVIG.

 

I think Kaplan loves his strep and that is the big problem. Weird dude.

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Diana, are you saying that Swedo told you she was not aware that our kids react to viruses/bacteria THIS YEAR? In 2010? I thought that was common knowledge among treating physicians. This just goes to show you that the MD's/researchers/parents really need to have a venue to talk, exchange ideas, etc. Seems like the researchers are just too far removed from the parents. She should at LEAST be talking to the MD's on the front-lines!

 

Stephanie

 

Kim and Buster - well, you know, these guys are so brilliant they outwit themselves! The biggest issue is they did not get the kids at onset of symptoms - they were sailing on and ill for quite some time before the study occurred.

 

TO THAT END: the new IVIG study as I sort of understand it, that Swedo will get rolling soon I hope!, will look at kids ONLY at the onset of PANDAS. It will only be 30 kids so this is sad but it will be very extensive with the bloodwork -- yes, looking at all the IGG's and underlying co-infections, white blood counts, etc etc - I certainly don't know all the numbers. Dr. Cunningham's test will be used. A strep expert will TRY to figure out the serotype of strep that is causing the problem as well.

 

The naysayers can talk circles around doctors that really don't care about kids with PANDAS; they are too tired to pay attention to the many failings in the study. Dr. Kurlan has NEVER seen an acute onset of pandas.....he has no clue how these kids have suffered. He has seen mild PANDAS cases that present with tics and mild ocd.

 

To make matters more confusing, Swedo told me as I mentioned in a February memo to parents, that she didn't realize PANDAS kids react to bacteria/viruses OTHER than strep. At least Kurlan and Kaplan got that part right. Swedo is wrong to insist that PANDAS is STREP related only -- it is an AUTOIMMUNE ILLNESS -- and maybe Kaplan and Kurlan and Swedo can lay down their swords and AT LEAST agree with that.

 

Dr. Leckman wrote a paper on kids with tourettes having Dysgammglobulinenmia in early childhood. The clinical picture for kids with "dysg" is pretty bleak - likely pandas kids are like this too. Borderline quite weak immunologically. The cure for "dysg" - monthly IVIG.

 

I think Kaplan loves his strep and that is the big problem. Weird dude.

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Buster, Diana, Kim and T mom, These guys especially Gilbert knows that tourettes and ocd can be caused by an autoimmune disease. (As Diana said from Leckman). In 2002 Gilbert told me that tics are most likely three different diseases, Either autoimmune, birth trauma- trauma related and developmental/genetic. My dd had an extremely high ana with chronic illness and no one thought her tics weren't from autoimmune. Gilbert even prescribed steroids. These stupid articles only influence the pediatricians whom barely skim over the subject. Without Diana and Cunningham my dd would have been in a psych ward. Blood markers they love. All immune docs now say wow your dd really fits the pandas profile, years of relapse and remit, low igg, high antidopamine antibodies, high ana that reduces with ivig. Basically what I am trying to say is neurology will not be the ones to change this disease protocol. All they want to do is separate out the immune def kids and send them to another specialty. Its not their specialty and they will always emphasize the other neurological deficiencies that they better understand and are working on for tourettes. Gilbert told me himself that the immune disease needs to be with rheum and immun docs. Its a shame these neurologists are so into their own success and research that they cannot even try to open the doors for the kids whom have pandas, out of fear of every parent wanting abx or ivig. I am not sure what I am trying to say here, other than do not get upset over Kurlan, he is just into his own study with mirapex, he has been consulting on this drug for rls (for rls patients not tourettes) for many years past and now he heading the five million dollar tourette study of this drug. Dopamine is his angle, autoimmune disease just complicates his objectives. So I am glad Swedo is doing another study. Does anyone know how long the study will take? Are they looking at PEX again? I agree with Buster that Kurlan and Gilbert slant their language, so that the uninformed easily dismiss the autoimmune component. What's so weird is that both know ocd and tics can be caused by an autoimmune trigger. They have forsaken our children to make their lives easier, so they can continue to manage TS as a genetic developmental dopamine disorder. After swedo's study with 30 more kids do you think this will be large enough to sway them? They want markers to distinguish these kids. 15 minutes they have with each patient, how will they know who is pandas and whom is not in 15 minutes? Dr T and Dr B and Dr L spend far more with each child. I look forward to swedo's results, but even with her results it will still require the parents to fight for their children. 15 minutes per child Gilbert has, and if you are "lucky" enough to see Gilbert all followup is scheduled with his nurse practitioner.

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Nevergiveup (love your name)

 

UGH -- I had something brilliant posted here but I did not hit the right button and I lost it!! I think I said...

 

You are right that PANDAS is an underlying immune problem. However, it really is a neuroimmunological problem. Neurologists (like DR. T) get it. We need pediatricians to recognize the disorder and screen for it, immunologists to do thorough immune and allergy evaluations and treatments, and neurologists to treat the immediate and residual neurological problems that may not go away after the exacerbation (like attention problems or persistent OCD). All 3 have a role and need to understand the disorder.

 

I can understand the American Academy of Pediatrics statement that kids should not be routinely put on long term antibiotics for Tics or OCD and they should not be routinely given IVIG for tics and OCD. However, they should be SYSTEMATICALLY evaluated for PANDAS, and the strep or other infections should be treated, and the immune system should be treated as well if it is warranted.

 

Some day we will have such a system in place. Someday pediatricians, immunologists, and neurologists will all know what PANDAS is and know what to do when a kid walks through their door with sudden onset of OCD or tics. We will have a standard protocol. That is what we need to work toward.

Edited by kimballot
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Kim,

A protocol would be nice. Sudden onset tics and ocd "according to Gilbert and Kurlan" are also seen in TS. Stress triggers TS and so does illness according to these guys. And at this point Gilbert defers all ocd to psych. I don't quite sound like my name today, sound like I am giving up, but I am sure these guys, Kurlan and Gilbert won't be treating pandas any time soon. Even with Swedo's new study. Spend several years taking your child to Gilbert and watch his "spin" on this. He does everything in his power to make sure these kids are not treated. He does not want this treated by neuro's if it is autoimmune. I agree with you though and a protocol would be great.

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Buster, Diana, Kim and T mom, These guys especially Gilbert knows that tourettes and ocd can be caused by an autoimmune disease. (As Diana said from Leckman). In 2002 Gilbert told me that tics are most likely three different diseases, Either autoimmune, birth trauma- trauma related and developmental/genetic. My dd had an extremely high ana with chronic illness and no one thought her tics weren't from autoimmune. Gilbert even prescribed steroids. These stupid articles only influence the pediatricians whom barely skim over the subject. Without Diana and Cunningham my dd would have been in a psych ward. Blood markers they love. All immune docs now say wow your dd really fits the pandas profile, years of relapse and remit, low igg, high antidopamine antibodies, high ana that reduces with ivig. Basically what I am trying to say is neurology will not be the ones to change this disease protocol. All they want to do is separate out the immune def kids and send them to another specialty. Its not their specialty and they will always emphasize the other neurological deficiencies that they better understand and are working on for tourettes. Gilbert told me himself that the immune disease needs to be with rheum and immun docs. Its a shame these neurologists are so into their own success and research that they cannot even try to open the doors for the kids whom have pandas, out of fear of every parent wanting abx or ivig. I am not sure what I am trying to say here, other than do not get upset over Kurlan, he is just into his own study with mirapex, he has been consulting on this drug for rls (for rls patients not tourettes) for many years past and now he heading the five million dollar tourette study of this drug. Dopamine is his angle, autoimmune disease just complicates his objectives. So I am glad Swedo is doing another study. Does anyone know how long the study will take? Are they looking at PEX again? I agree with Buster that Kurlan and Gilbert slant their language, so that the uninformed easily dismiss the autoimmune component. What's so weird is that both know ocd and tics can be caused by an autoimmune trigger. They have forsaken our children to make their lives easier, so they can continue to manage TS as a genetic developmental dopamine disorder. After swedo's study with 30 more kids do you think this will be large enough to sway them? They want markers to distinguish these kids. 15 minutes they have with each patient, how will they know who is pandas and whom is not in 15 minutes? Dr T and Dr B and Dr L spend far more with each child. I look forward to swedo's results, but even with her results it will still require the parents to fight for their children. 15 minutes per child Gilbert has, and if you are "lucky" enough to see Gilbert all followup is scheduled with his nurse practitioner.

 

nevergiveup and kimballot, (and all who have replied here)...

I understand and pretty much agree with what you are saying, but how exactly do they go about figuring out if autoimmune is the problem? For someone like me, who even after seeing two of the PANDAS docs, and being treated as such, I feel like I still don't really hve a definitive answer as to what my son's problem is. I'm not comfortable assuming anything. he surely has all the symptoms, maybe not all at once, but tics since 3 1/2, ocd. sensory, etc..... But so far, abx doesn't seem to do anything remarkable, and we don't have glaring proof of strep, ..all testing comes out normal, no deficiencies, no co-infections, nothing (cam k was 179,. with high anti-lysogangliosides)..........so basically I have done all the homework and explored all avenues. where else do I go from here? My son is not presently sick with strep or anything else, but he always has tics, mostly vocal, at pretty much every point. there's no remittance, just sometimes more waxy than others.

 

sorry to put out my own example, not trying to make this discussion about us, but I think there are alot of us here who really just don't know exactly where they fit in, the ones with manageable symptoms, not

in 'exacerbation', or 'crisis'..... ...

 

I absolutely agree that all children with symptoms should be screened, checked, even a trial of abx should be fine....but what do you do subsequently?

 

I would not do steroids of IVIG at this point, not knowing if we are or not pandas and 'autoimmune'... I personally do feel comfortable from all my research that tics, tourettes and maybe ocd, does have an autoimmune component, but if that is so, then why can't it be proved?

 

when you guys say there should be a standard protocol, what would you think that should encompass?

 

I, too, have a fear of parents getting the wrong information and trying these things without proof of what is going on with their child.

 

thanks

Faith

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Buster,

just going along with your original post, you say 'untreated' strep.......but what if the strep IS treated somewhere down the line? my son does not have it now, hasn't in a long time that I know of, no high titers to substantiate, ...... so if he's had abx and is not sick now, ...why does he still have tics and other comorbids?

 

This is the point where I just fall off and can't get past.......

 

 

thanks

Faith

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You know.... I just need to add with proper treatment OCD and attention problems do resolve. I think we need to expect 100% recovery or we 'do' get something less (residual neurological problems). Our son is living proof as well as others that it is possible for that to happen. BUT, in our case it wasn't one IVIG treatment but 3 IVIGs that put the OCD/attention issues into full remission. Now, we are tentatively working towards continued remission with an eye on reducing antibiotics. With that said, our sudden on-set was June 24th, 2009 (but sick with minor symptoms for 1 1/2 years prior to sudden on-set) and its been an extremely long tiring, stressful 11 months. I also feel that this would have been much less of an issue for our family had they addressed the chronic coughing 'TIC' fully prior to sudden on-set. Instead we were told the cough was psychosomatic and hence the underlying infection/s was left untreated for another year.

 

EARLY intervention might also be the key to totally avoiding more aggressive treatments and why I appreciate Beth Maloney's campaign of 'Got Strep'.... Its a start in the right direction.

 

I too look forward to the day when this is all ironed out BUT for now each of our children's experiences will serve to help millions more.

 

-Wendy

 

 

 

 

Nevergiveup (love your name)

 

UGH -- I had something brilliant posted here but I did not hit the right button and I lost it!! I think I said...

 

You are right that PANDAS is an underlying immune problem. However, it really is a neuroimmunological problem. Neurologists (like DR. T) get it. We need pediatricians to recognize the disorder and screen for it, immunologists to do thorough immune and allergy evaluations and treatments, and neurologists to treat the immediate and residual neurological problems that may not go away after the exacerbation (like attention problems or persistent OCD). All 3 have a role and need to understand the disorder.

 

I can understand the American Academy of Pediatrics statement that kids should not be routinely put on long term antibiotics for Tics or OCD and they should not be routinely given IVIG for tics and OCD. However, they should be SYSTEMATICALLY evaluated for PANDAS, and the strep or other infections should be treated, and the immune system should be treated as well if it is warranted.

 

Some day we will have such a system in place. Someday pediatricians, immunologists, and neurologists will all know what PANDAS is and know what to do when a kid walks through their door with sudden onset of OCD or tics. We will have a standard protocol. That is what we need to work toward.

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Thanks, SF mom - I can only hope that we will one day see full remission. My son has been dealing with this since he was an infant and he is 13, so I just keep thinking that there has to be some permanent neurlogical problems that we will see when we are all done. But perhaps we will not. Perhaps you are correct. If my son gets to a point of full recovery without residual neurological deficits you will be hearing me screaming shouts of joy. You are right. I need to keep pushing and not assume that we will have something less than optima in the endl. We are still learning...

 

And - Buster - sorry to have hijacked this thread. Hopefully you will still get comments about the article!

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